East Bay HIV/STI Case Management Manual

Updated: December 2024

Greetings, 

Welcome to the East Bay HIV/STI Case Management Manual. 

This effort, led by East Bay Getting to Zero, involved some of the most expert minds in our East Bay HIV/STI services network. Each section was written in the spirit of EBGTZ’s mission, vision and core values:

Our mission is to advance health equity and promote healing for all people impacted by HIV.

Our vision is an East Bay with zero HIV stigma, health disparities, or new HIV transmissions.

Our core values: 

• People-first
• Trauma-informed
• Healing-engaged
• Anti-racist
• Sex positive
• Community-driven
• Data and science-informed
• Adaptive and resilient

While each section and many of the subsections are authored by different individuals with varying voices and perspectives, there is an overarching unity and sense of cohesion which is evident throughout the manual. 

We believe this unity results from the years of hands-on experience each author brings to the role of Case Management. Through education, life experience, and trial and error, each author has brought forth the core principles needed to be an effective Case Manager. 

It is our hope that you will return to this resource repeatedly for training, brainstorming and continuing education. Here is a snapshot of what you will find in this manual:

In Section 1: Case Management Scope of Practice – a basic understanding of the core principles and tenets of Case Management are covered.

In Section 2:  Case Management Strategies – Developing your case Management Philosophy. Here, we discuss various types of care and the philosophies that undergird them.

In Section 3: Assessments and Care Planning – the various ways you can get to know your client and meet program guidelines by developing effective assessments and completing comprehensive care plans. 

In Section 4: HIV History and Stigma – we provide some broad background on the development of the epidemic here in the East Bay.

In Section 5: Alameda County Epidemiology – we provide a current picture of the epidemic’s landscape here in Alameda county and some helpful tips on interpreting the data.

In Section 6: HIV 101 and HIV Treatment – a basic overview of HIV and the current treatments are provided.

In Section 7: Sexual Health 101 – a basic overview of STDs. STIs and their current treatment strategies are explained and identified.

In Section 8: Making Strong Referrals and Warn Hand-offs – gives you a better understanding of how to approach these essentials in a manner that is supportive for your clients.

In Section 9: Self-Care and Preventing Burnout – we outline practices and philosophies that will help you to avoid burnout, remain calm and be present for your team and your clients.

In Section 10: Professional growth and Opportunities for Case Managers – the focus is upon supporting yourself through case conferencing and other types of supervision that help keep you growing and grounded.

In Section 11: Caring For Specific Populations – Tips and insights on how to work with clients who are part of specific populations that you may not have experience with. 

While this is not an exhaustive resource, we hope it’s a helpful start. Please use it as a guide that you can supplement with additional resources and evidence-based research as appropriate. If you have feedback, please share it through this feedback form.

Thank you for your support.

Yamini Oseguera-Bhatnagar, East Bay Getting to Zero & Damon Powell, Primary Care at Home

Section 1: Case-management scope of practice

Author: David Gonzalez

Broadly speaking, case management often involves wearing multiple hats; it is interdisciplinary, as each client has unique needs. A case manager might assist with disclosure of test results, navigating barriers at the pharmacy, insurance enrollment, data entry, care coordination between members of the client’s care team, providing direct services or referrals for legal aid, language interpretation, etc. 

On top of this, agencies are often organized differently, so positions that assist clients are distributed at different steps of care. For example, the person who helps a client enroll in health insurance might not be the same person who helps them enroll in ADAP (AIDS Drug Assistance Program). Moreover, how the case manager position is funded can change over time, which can impact which services are provided and by whom. 

Agencies may have different training requirements for case manager positions. For example, some hospitals might have nurse case managers, and others might require an advanced degree, while some will prioritize hiring individuals with relevant lived experience over those with a more traditional resume. Job titles also vary and may include medical versus non-medical case manager, care coordinator, patient advocate, and community health worker, to name a few. 

This section is meant to provide a cohesive sense of the scope of practice between these essential staff, under the expansive umbrella of case management. While not all parts might apply to each reader, it is our hope that most do. This manual is meant to provide a foundation, but it is also a living document. It is meant to evolve as the landscape of services for people living with HIV or at risk for HIV in Alameda and Contra Costa Counties continues to grow and change.

What is case management?

Case management is a medical and/or socioeconomic intervention. It seeks to improve access to essential services for individuals and/or communities that might otherwise find such services challenging to access due to barriers that emerge from social determinants of health (SDOH). 

The Centers for Disease Control and Prevention (CDC) defines SDOH as “nonmedical factors that influence health outcomes” (https://www.cdc.gov/about/priorities/why-is-addressing-sdoh-important.html). SDOH can include disability, substance use history, incarceration status/history, gender, sexual orientation, race/ethnicity, language, national origin, immigration status, religion, age, history of sex work, lack of housing, lack of transportation, and poverty. 

SDOH and their associated stigmas very often overlap. This creates new intersections of stigma and prejudice that worsen or add barriers to care that reinforce the lived experiences of oppression, violence, and trauma many persons are already carrying. Examples of barriers that arise from SDOH include: 

• health literature that is not written or translated in a client’s first language
• assumptions of sexual behavior based on heteronormative conceptions of gender and sexuality
• being dead-named and misgendered by frontline staff
• lacking reliable transportation to arrive at appointments on time
• being ineligible for programs or services due to immigration status
• inability to navigate systems due to anxiety or medical mistrust

Case management seeks to change how clients with experience of oppression, violence, and trauma engage with HIV prevention and care, while also addressing the systems that cause these experiences in the first place in marginalized communities.

By understanding the system/institution while working with the individual, case managers emphasize certain beliefs and principles while ensuring that clients have access to resources and essential services. These principles include firm belief in: 

• a client’s autonomy
• their ability to know themself and their body
• their ability to continually learn about their body, their mind, and their options to heal both
• their right to essential services such as housing, food, medical care, and overall safety

Held together, these beliefs (and services) form the foundation for client-centered or patient-centered care, trauma-informed care, and/or a strengths-based approach. 

Understanding the SDOH unique to each individual client allows case managers to hold their clients in unconditional positive regard. At the same time, within the framework of client-centered care, effective case management is an inherently collaborative process between the case manager and their client. Such collaboration requires an understanding that both case manager and client are fallible. Often this requires the case manager to offer grace to both their client and themself as they focus on the opportunity to learn from mistakes. It is equally as important and therapeutic to both case manager and client to celebrate wins and successes.

What is generally within the scope of a case manager’s role?

According to the Case Management Society of America:

“Case managers are healthcare professionals who serve as patient advocates, supporting, guiding and coordinating care for patients, families, and caregivers as they navigate their health and wellness journeys. They serve as the center of communication, connecting individuals/caregivers with members of the healthcare team and community to impact acute and chronic disease management and improve population health.”

It is important to recognize the wide variation in the scope of care/practice between case managers and similar roles at different agencies and organizations, including:

• non-profits at large
• municipal governments
• federally qualified health centers
• faith-based organizations
• hospitals
• community health clinics
• shelters 

How a case manager provides direct services, links clients to others, or initiates referrals varies between organizations. Some case managers might provide a warm hand-off, taking the client directly to another site to better access a service that cannot be directly provided by their organization. Others might be limited to offering a pamphlet, website, or phone number for the same organization. Some might specialize in working with a specific community, such as immigrants from Central and South America or individuals with substance use disorder. Others might work with an organization that offers services to individuals with diverse lived experiences but only within a narrower context, such as food access or housing. 

Regardless, all case managers have an obligation to at least be able to provide relevant contact information for all of the services that their clients request access to, and to consult their supervisors and/or colleagues if they need help finding relevant information. In this way, case managers try to provide a “one-stop shop” for their clients to better reduce any barriers to care and assistance. 

Case managers must also manage expectations, however, and understand the limits to their abilities. They are rarely the experts on anything outside of advocating for their clients or providing access to highly specific resources like ADAP, Project Open Hand, and Housing Opportunities for People with HIV/AIDS (HOPWA) housing. A key tool for case managers is the connections they establish with experts, such as the dedicated Spanish-speaking paralegal at a legal aid clinic, a manager at the local shelter for people who have experienced domestic violence, or the linkage coordinator at the local hospital.

Case managers must use their best judgment in finding the line between going above and beyond and experiencing burnout. While finding gratification in helping others, it is easy for a case manager to embrace a “superhero” role. An example might be contacting a client on your day off, or driving to the client’s home when they stop returning emails (unless the scope of your position explicitly allows for home visits). 

In attempting to be the superhero, case managers can burn out or set a precedent that is hard to live up to for all their future clients. They also lose sight of the collaborative nature of their work, reshaping it into something more like the “top-down” traditional models of social welfare and medicine. Remembering the core beliefs of client-centered care (e.g., client autonomy) can help case managers avoid the superhero role. 

Those beliefs show up in the day-to-day work of a case manager through: 

• listening to the client
• remaining curious and humble in conversations
• validating their experiences and concerns
• documenting their conversations as needed/required
• providing simple health education as needed using accessible language
• forwarding their concerns to the appropriate staff, organizations, etc.
• providing clients with the resources and information that they need to find care that the case manager is unable to directly provide. 

This scope of care reminds case managers that larger struggles of communities cannot be solved by the case manager alone or within a vacuum. Systemic and institutional change often comes from social and political movements, and case managers themselves face the contradiction that they themselves are part of a system or institution; they are advocating from within the machine, not from without it. This is not meant to diminish the value of the work, but to highlight the boundaries within the work. By recognizing the boundaries, we can help avoid the superhero role and the consequent burnout and turnover of positions. 

Understanding the scope of work (Ryan White agencies) you are funded/hired for

It is important to understand that not all agencies and organizations serving people living with HIV are Ryan White funded. This context matters, because how a case manager’s position is funded often determines the work that is required for their role and how to document it. This understanding also promotes the case manager’s growth within the field, empowering them to understand important institutions within public health with a more global perspective. Some positions might be funded by the city, the county, the state, another federal funding source, or even a private funding source such as a pharmaceutical company or foundation. Furthermore, not all positions working in the HIV prevention and care field are funded through the Ryan White Program, even if their clinic receives Ryan White funding. 

Getting clarity on your job description for your position

Just like understanding how a job is funded, understanding the job description more fully helps a case manager to succeed in their position. It is highly recommended for case managers to keep a copy of their job description handy. This can serve as a guide in their onboarding process. It also provides clarity when seeking feedback. If their job is unionized, it often provides the measures by which they are evaluated on an annual basis. If they don’t have access to their job description, they should request it from their supervisor or the Human Resources team. 

Your agency’s administrative support structure and your access to it

Getting to know how an agency operates, all of its hierarchies, chutes and ladders, etc., is a daunting task that often takes a while to understand! Even if the case manager has a flow chart or staff directory (which they should ask their supervisor for), there are often unspoken flow charts or rules of thumb that can be hard to sort out at first. Here are some tips for case managers to help set them up for success:

• Always take the opportunity to introduce yourself and your position to staff that you meet, and reach out to new staff as a resource—especially with other frontline staff! Building connections and offering help will only serve you and your clients better as you try to increase your efficiency and reduce barriers to care. 
• If you have an internal website (non-public facing), make sure to explore its nooks and crannies (as well as the public-facing website). 
• Two common departments where it’s good to remember names and faces, in particular, are Human Resources and Quality Improvement. 
• If your position is unionized, make sure to get to know your union representatives!

Ethical standards in case management

NOTE: Many of these topics refer to specific legal rules and regulations. It is vitally important to consult with your supervisor about ensuring that your work and the work you observe adhere to legal obligations. 

Mandated reporting 

NOTE: The authors of this manual are not experts in mandatory reporting. Not all examples of abuse or violence described in this section necessarily meet the definition of reportable. Also, case managers might not always fall under the definition of mandatory reporter, depending on the scope of practice, your job description, etc. Ask your supervisor whether you are a mandated reporter, and how that is defined and determined by California state law. If you are a mandated reporter, seek out professional training ASAP if you have not had training already. High-quality training in mandatory reporting is helpful even if you are not a mandated reporter, as case managers coordinate clients’ care with colleagues who ARE designated as mandatory reporters, including doctors and licensed clinical social workers.

A final note on mandated reporting:

A common recommendation for case managers and other types of social workers is to inform clients ahead of time that you are a mandated reporter. The idea is that by warning clients ahead of time, the case manager can forestall situations where their role as a mandated reporter might be called upon. The writers of this manual would urge you to consider this common recommendation shrewdly. Context is key; there is no “one size fits all” rule here, especially for case managers. Please discuss further with your direct supervisor.  

Confidentiality

Confidentiality, and the right to privacy, undergirds the entirety of the case manager’s day-to-day job. The individuals we work with have experiences that often lead them to distrust doctors, hospitals, clinics, social workers, and even the government and the systems it administers. These experiences vary widely, including medical racism, shaming of sexual practices, medical debt, confusing jargon, and criminalization of substance use and sex work. HIV stigma reinforces the need for confidentiality. It is vitally important to verbally reiterate confidentiality and the right to privacy when attempting to build rapport with new clients or when introducing new services or requirements to clients. (For more on these topics, please revisit the beginning of this section and the terms client-centered care and trauma-informed care.)

There may be times when confidentiality, as the client understands it, is not possible. A client might ask for a confidential rapid HIV test, when they really mean an anonymous HIV test. They might ask if STI testing results are sent to the government, requiring you to explain the importance of reporting results to your local department of public health. Other examples where confidentiality can become murky from the client’s perspective include mandatory reporting and partner services. (In this manual, see Section 7: Sexual Health.) All of these examples highlight the importance of transparency and meeting the client where they are at. 

Informed consent

According to the National Institutes of Health, “Informed consent is the process in which a  healthcare provider educates a patient about the risks, benefits, and alternatives of a given procedure or intervention. The patient must be competent to make a voluntary decision about whether to undergo the procedure or intervention.” 

At a very basic level, informed consent aligns with principles of client-centered care. It provides clients with options, centering their autonomy and knowledge to decide what is the best next step for them in their care plan. It educates clients on potential side effects, benefits, cost, and other considerations, equipping clients with the necessary information to make an informed decision and confirm informed consent to proceed in a specific direction. 

However, it is important to understand that case managers are not healthcare providers just as much as it is important to understand the shared principles in which we collaborate with  healthcare providers in offering ongoing care to clients/patients. 

As patient advocates, case managers must also speak up when they are concerned that informed consent might not be properly adhered to in the process of determining a course of treatment, a care plan, next steps, etc. This is especially the case if the case manager more intimately understands the lived experience of their client while the  healthcare provider might not (for example, if the case manager is a former drug user, the client is struggling with substance use, and the  healthcare provider has not experienced that struggle).

Trauma-informed care recognizes the unique experiences that clients bring with them in the process of accessing and accepting care, as well as the universal truth that we all have biases borne out of our lived experiences. An essential part of informed consent, from the perspective of client-centered care and trauma-informed care, is the consideration of these lived experiences and their impact on how a client might receive information more readily or accessibly. The case manager might be in a position to best advocate for these considerations. 

An example of where the case manager might exercise a traditional delivery of informed consent might be if a client living with HIV asks the case manager to help them talk to their partner about PrEP. If this client is durably undetectable (see Section 6: HIV 101 & HIV Treatment and Section 7: Sexual Health), there is no risk of transmission to their partner through sex. However, it is common for HIV stigma to impact the decision of either the client or their partner—e.g., the client and/or their partner might want the partner to be on PrEP, whether or not the client is undetectable. In this scenario, the case manager would reiterate education on U=U (see Section 6: HIV 101 & HIV Treatment and Section 7: Sexual Health), facilitate a conversation where both client and partner can voice their feelings safely, reiterate the safety of taking PrEP, reiterate the role of the prescribing provider in the decision making process, and reaffirm the partner’s autonomy in making this decision. 

HIPAA/Appropriate information sharing/RoI

HIPAA stands for Health Insurance Portability and Accountability Act. It is a far-reaching umbrella of federal laws, enacted in 1996, that regulates the ways private health information can be shared between various entities (clinics, labs, hospitals, dialysis centers, insurance companies, etc.) and individuals, how that information must then be protected, and how these laws are enforced when violations occur. 

Any entity that collects private health information is mandated by HIPAA to provide training on HIPAA to its workers. This is why we will not go into much detail about HIPAA here—you have likely already received or will receive a thorough training. However, there is one very important point to make here: HIPAA allows for any two entities to share between them the minimum and necessary amount of health information of any patient that is receiving care from both entities.

To put it simply, if a client is receiving services at another organization that collects protected health information, and they are continuing to access services with your organization, you can feel free to share the minimum and necessary information with the other organization in order for the client to continue care. However, always confirm with your supervisor! 

If it is not clear that you can share information readily, always obtain a Request of Information (RoI) form that confirms the patient’s consent to share the information with a wet signature. 

Takeaways for case managers

Seek out trainings in the following areas, especially if you haven’t had these trainings in the past (refreshers are always recommended!):

• Motivational interviewing 
• Trauma-informed care
• Mental health first aid
• De-escalation
• Harm reduction/Narcan delivery

Section 2: Case Management Strategies: Developing Your Case Management Philosophy

By Dr. Tony Sillemon, Sutter Bay Hospital-East Bay Advanced Care (EBAC)

Building Rapport  

Building rapport is the cornerstone of effective case management. A strong rapport fosters trust, cooperation, and openness, enabling a collaborative relationship where clients feel valued and understood. 

Here are several techniques you can use to build rapport with your clients:

• Active listening: Pay full attention to the client. Show you are listening through nodding, maintaining eye contact, and providing verbal affirmations (e.g., “I understand,” “Tell me more”). Reflect what the client says to ensure understanding and show empathy.
• Empathy: Express genuine concern and understanding of the client’s feelings and experiences. Remember to avoid judgment and offer your client unconditional positive regard.
• Consistency and reliability: Be dependable and follow through on commitments you make with your client. Establish regular contact and be punctual for appointments.
• Clear communication: Use simple, direct language to avoid misunderstandings. Be honest and transparent about the case management process and any potential limitations.

These exercises can help you practice active listening, approaching with empathy, and other skills needed to build rapport with clients.

1. Role-playing scenarios:
   • Participants pair up and take turns being the case manager and the client.
   • Practice active listening and empathy by discussing a client’s hypothetical situation.
   • Debrief as a group, discussing what worked well and areas for improvement.
2. Reflective journaling:
   • Participants write about their personal biases and how these might impact their interactions with clients.
   • Share insights in small groups to promote awareness and growth.
3. Group feedback sessions:
   • After role-playing, participants provide constructive feedback to each other.
   • Focus on specific examples of effective communication and areas for improvement.

Cultural Humility

Cultural humility involves a lifelong commitment to self-evaluation and self-critique, recognizing and challenging power imbalances, and developing partnerships with people and groups who advocate for others.

Principles of cultural humility include: 

• Self-reflection: Make a commitment to continuously examining your own cultural identities and biases, and reflecting on (and addressing) how these influence your interactions with clients.
• Respect for clients’ cultural identity: Ask your clients about their cultural background and preferences, then integrate this cultural knowledge into care plans and decision-making processes.
• Advocacy: Work to identify, address, and reduce systemic barriers that affect marginalized populations. Partner with community organizations to support culturally relevant services for your clients.

The following exercises can help you practice cultural humility in your work.

1. Cultural humility training workshops:
   • Engage in activities and discussions that explore different cultural perspectives.
   • Develop strategies for integrating cultural knowledge into case management practices.
2. Discussion groups:
   • Share personal cultural experiences and biases in a safe and open environment.
   • Discuss how these experiences impact interactions with clients, and explore ways to practice cultural humility at your site.
3. Role-playing diverse client scenarios:
   • Simulate interactions with clients from various cultural backgrounds.
   • Focus on asking culturally sensitive questions and showing respect for diverse perspectives.

Supporting Self-Efficacy

Self-efficacy is the belief in one’s ability to succeed in specific situations or accomplish a task. As a case manager, enhancing self-efficacy in your clients empowers them to take active roles in their care and make positive changes.

Try these strategies for supporting clients in developing self-efficacy:

• Set achievable goals: Work with your clients to set realistic and incremental goals for positive change, such as securing a bus pass or keeping an important appointment. Celebrate small successes to help build clients’ confidence.
• Provide positive feedback: Offer constructive feedback that emphasizes your clients’ strengths and progress. Encourage your clients to reflect on their achievements and skills.
• Skill-building: Provide opportunities for clients to learn and practice new skills, and offer resources and support to help them overcome obstacles.

Exercises like these can help you gain necessary skills to support your clients’ self-efficacy.

1. Goal-setting workshops:
   • Participants identify and plan their objectives in small groups.
   • Share goals and action plans with the larger group for feedback and support.
2. Skill-building activities:
   • Tailor activities to individual client needs, such as job interview practice or financial management.
   • Use role-playing to simulate real-life scenarios and build confidence.
3. Success story sharing:
   • Encourage participants to share personal success stories.
   • Discuss the strategies and supports that contributed to their achievements.

Motivational Interviewing

Motivational interviewing is a client-centered approach that enhances motivation to change by helping clients explore and resolve ambivalent feelings. It involves a collaborative conversation style that strengthens a client’s commitment to change.

Key components of motivational interviewing include:

• Stages of change: In this model of behavior change, people progress through five stages of “readiness to change.” These are precontemplation, contemplation, preparation, action, and maintenance. Understanding these stages can help you tailor your interactions to best support your clients.
  
  In precontemplation, the client is not yet considering change. In the contemplation stage, the client is aware of the need for change but unsure about taking action. In preparation, the client is planning to act soon. In the action stage, the client is actively taking steps to change. And in maintenance, the client is working to sustain the change over time.
• OARS: This approach can help guide conversations with clients in a way that builds trust and elicits more meaningful information. OARS has four parts: open-ended questions, affirmations, reflective listening, and summarizing.
  
  Unlike questions that can be answered “yes” or “no,” open-ended questions encourage clients to really think about their responses and express their thoughts and feelings. For example, asking “What do you know about PrEP?” instead of “Do you know about PrEP?” invites a client to share their knowledge and perspective.
  
  Affirmations are sincere statements that recognize and reinforce a client’s strengths and efforts toward positive change. These can be as simple as saying, “I’m really glad you came here today” or “I can tell you’re working hard on your goal.” 
  
  In reflective listening, use your own words to mirror what the client communicates, to show your understanding and to prompt further exploration. An example might be, “From what you’ve just shared, it seems like you’re worried about being able to refill your prescriptions on time; did I get that right?” 
  
  With summarizing, sum up and reflect the main points of the conversation to ensure clarity and understanding. Summarizing can also help redirect or wrap up a conversation, such as saying, “We’ve made your first PrEP appointment for tomorrow and discussed how you’ll get to the clinic. Is there anything else you’d like to discuss before you leave today?”

These exercises can help prepare you to use motivational interviewing with your clients. 

1. Role-playing:
   • Practice the OARS technique in pairs, with one participant acting as the client and the other as the case manager.
   • Rotate roles and discuss the experience in a group debrief.
2. Case studies:
   • Analyze case studies to identify the stages of change.
   • Discuss strategies for using motivational interviewing techniques at each stage.
3. Group simulations:
   • Conduct group simulations where multiple participants interact with a single client scenario.
   • Focus on collaborative problem-solving and motivational strategies.

Positive Reinforcement

Positive reinforcement involves encouraging desired behaviors by rewarding them, thereby increasing the likelihood that these behaviors will recur.

Some basics of implementing positive reinforcement are:

• Identify desired behaviors: Clearly define the behaviors you want to encourage your client to engage in, such as regularly attending their medical appointments.
• Choose appropriate rewards: Select rewards that are meaningful and motivating to the client. Rewards can be tangible (e.g., gift cards) or intangible (e.g., verbal praise).
• Consistent application: Apply positive reinforcement consistently to establish a clear connection between the behavior and the reward.

Try these exercises to practice using positive reinforcement in your work.

1. Behavioral contracts:
   • Create contracts that outline specific behaviors and associated rewards.
   • Discuss and adjust contracts in group settings to ensure fairness and motivation.
2. Group discussions:
   • Share experiences with different reinforcement strategies.
   • Discuss the effectiveness of various approaches and brainstorm new ideas.
3. Role-playing rewards:
   • Simulate scenarios where participants practice giving and receiving positive reinforcement.
   • Focus on timing, delivery, and appropriateness of rewards.

Therapeutic Counseling

Therapeutic counseling in case management involves using evidence-based techniques to support clients in addressing any psychological and emotional challenges. (Providing mental healthcare is outside of the case manager’s scope, however; please seek referral and supervision from licensed mental healthcare providers if your client needs additional support.)

Therapeutic counseling techniques and approaches include: 

• Building a therapeutic alliance: Establish trust and rapport to create a safe space for your clients. Within that safe space, be consistently empathetic, non-judgmental, and supportive.
• Cognitive-behavioral techniques: Help clients identify and challenge any negative thought patterns. Encourage the development of healthier thinking and coping strategies.
• Solution-focused approaches: Focus on your clients’ strengths and resources, such as their determination or their strong support network. Collaborate on finding practical solutions to current problems.

The following exercises can help you put therapeutic counseling techniques to work.

1. Guided self-reflection:
   • Conduct exercises where clients identify and reframe negative thoughts.
   • Share reflections in small groups to promote understanding and support.
2. Problem-solving workshops:
   • Use real-life scenarios to practice solution-focused techniques.
   • Work in teams to develop practical solutions and present findings to the group.
3. Role-playing counseling sessions:
   • Simulate counseling sessions to practice therapeutic techniques.
   • Rotate roles and provide feedback on the effectiveness of different approaches.

Harm Reduction Principles

Harm reduction principles aim to minimize the negative consequences associated with certain behaviors, without necessarily requiring that those behaviors stop. Syringe exchange programs are an example of harm reduction: Rather than trying to eliminate injection drug use, these programs work to reduce the likelihood of HIV transmission, overdose, and other potential harms associated with injecting drugs.

Some basics of harm reduction in the setting of case management are:

• Acceptance: Accept that potentially harmful behaviors are part of the client’s life. Focus on reducing the potential harm rather than eliminating the behavior. 
• Human rights: Respect the client’s autonomy, choices, and expertise in their own life. Consistently provide non-judgmental support.
• Incremental change: Encourage small, manageable steps toward reducing harm. Celebrate the client’s progress, no matter how small.

Use these exercises to practice applying harm reduction principles in your own work. 

1. Harm reduction planning:
   • Work in groups to develop harm reduction plans for hypothetical clients.
   • Present plans and discuss strategies for implementation and improvement.
2. Case studies:
   • Analyze case studies on harm reduction strategies and their outcomes.
   • Discuss the successes and challenges of different approaches.
3. Role-playing scenarios:
   • Practice harm reduction techniques in simulated client interactions.
   • Focus on building trust and supporting incremental change.

Trauma-Informed Care

Trauma-informed care recognizes the impact of trauma on individuals, their families, and their communities, and integrates this understanding into all aspects of service delivery to promote healing and avoid re-traumatization. This approach acknowledges that trauma can affect clients’ physical, emotional, and mental health, as well as their behaviors and how they engage with services. 

Core principles of trauma-informed care include:

• Safety: Always ensure your clients’ physical and emotional safety at your site. Create a welcoming and secure environment, so clients can feel secure with you, your fellow staff, and your site’s environment.
• Trustworthiness: Maintain transparency and honesty in all client interactions. Build trust through consistency and reliability.
• Choice: Empower your clients by offering choices and respecting their autonomy. 
• Collaboration: Foster a partnership approach between clients and service providers, to help level the power differences between clients and staff. Value client input and perspectives, and collaborate with clients on all decision-making. 
• Empowerment: Focus on your clients’ strengths and resilience, and center their ability to heal. Encourage their self-advocacy and skill-building.

The following exercises can help you incorporate trauma-informed care practices into your work. 

1. Trauma-informed care training:
   • Engage in sessions that cover the principles and practices of trauma-informed care.
   • Participate in role-plays to practice trauma-sensitive interactions.
2. Reflective practice:
   • Conduct reflective exercises to assess and improve trauma-informed approaches.
   • Share reflections and strategies in small groups.
3. Scenario-based learning:
   • Work through scenarios that involve trauma-informed care principles.
   • Discuss the challenges and solutions with peers.

Conflict Resolution & De-escalation Techniques

As a case manager, knowing how to manage conflicts that arise with a client can help reduce stress, preserve client trust, and maintain the client’s and staff’s physical and emotional safety. Conflict resolution and de-escalation techniques are essential for managing and resolving disputes or potentially volatile situations calmly and constructively.

Strategies include:

• Staying calm: Maintain your composure to avoid escalating the situation with reactive behavior.
• Active listening: Show empathy and understanding for your client to help defuse tension. Validate their feelings and concerns.
• Non-confrontational language: Use “I” statements to express your perspective without blaming. Avoid aggressive or accusatory language. 
• Problem-solving: Focus on finding a mutually acceptable solution. Collaborate to address the underlying issues that led to the conflict.

Exercises like these can help build your de-escalation and conflict resolution skills.

1. Role-playing conflict scenarios:
   • Simulate conflict situations and practice de-escalation techniques.
   • Rotate roles and discuss the effectiveness of different strategies.
2. Workshops on effective communication:
   • Participate in workshops that teach communication and negotiation skills.
   • Practice these skills through interactive exercises.
3. Group problem-solving:
   • Engage in group activities to solve hypothetical conflicts.
   • Discuss the approaches taken and the outcomes achieved.

Personal Safety in the Field

Your work with clients matters, and your safety matters. Maintaining personal safety in the field is crucial for case managers who work in diverse and sometimes unpredictable environments.

The following safety practices can be helpful: 

• Situational awareness: Be aware of your surroundings always. Identify potential hazards around you and plan for how to avoid them.
• Safety protocols: Always follow your organization’s established safety guidelines and procedures. Use safety check-ins, such as texts or phone calls, with a designated colleague.
• Self-defense training: Consider taking a training in basic self-defense techniques. Carry any necessary safety equipment as recommended by your organization and/or your self-defense instructor.
• Emergency preparedness: Have a plan for emergencies and know how to execute it. Carry emergency contact information and a fully charged mobile phone every time you’re in the field.

The following exercises can help you be prepared and stay safe in the field. 

1. Safety drills:
   • Participate in drills to practice emergency response scenarios.
   • Discuss and refine safety plans based on drill outcomes.
2. Workshops on personal safety:
   • Attend workshops that cover situational awareness and self-defense techniques.
   • Engage in hands-on practice to build confidence and skills.
3. Group discussions:
   • Share personal experiences related to field safety.
   • Discuss strategies for improving safety practices and protocols.

Reinforcing Professional Boundaries 

It can be tempting to “go the extra mile” for clients—we want to support them and help them succeed!—but reinforcing professional boundaries is essential for maintaining a healthy and ethical relationship with clients. Clear boundaries help protect both the client and the case manager and uphold professional standards.

Strategies for setting and maintaining boundaries include:

• Set clear expectations: Communicate the boundaries of your role and the limits of your relationship with clients. Be clear about what clients can expect from you, such as your availability and how they can and cannot contact you.
• Maintain consistency: Once you’ve established boundaries with clients, adhere to them consistently. Avoid making exceptions that can blur professional lines, such as meeting with a client socially.
• Seek supervision and support: Regularly consult with supervisors or peers to discuss any boundary challenges. Use your support networks to maintain perspective and accountability.

Try these exercises to help set and maintain your professional boundaries.  

1. Role-playing boundary scenarios:
   • Practice setting and maintaining boundaries in simulated client interactions.
   • Discuss the challenges and strategies for upholding boundaries.
2. Reflective journaling:
   • Write about personal experiences with boundary-setting.
   • Share insights and strategies in small group discussions.
3. Boundary workshops:
   • Attend workshops that focus on the importance of professional boundaries.
   • Participate in activities that reinforce boundary-setting skills.

By incorporating these comprehensive strategies and exercises, case managers can enhance their effectiveness, support their clients more robustly, and maintain a professional, ethical practice.

Section 3: Assessments & Care Planning

Authors: Judy Eliachar & Kenny Hall

The first meeting between the medical case manager and a new client has a twofold purpose: 

• to establish the client’s eligibility for Ryan White Program services and enroll them in the program if eligible, and 
• to begin the process of building rapport and establishing a meaningful working relationship.

Program Eligibility

If the client’s eligibility for Ryan White Program services has not yet been determined, the first steps are to review the client’s intake documents, determine eligibility for services, and complete the enrollment process. This process may be done by the medical case manager or other designated staff. 

If the client has already been enrolled in Ryan White Program services, the referring service provider should be asked for copies of documents confirming program eligibility and enrollment. If the prospective client is found to be ineligible for Ryan White Program services, they should be referred to an appropriate agency in the community for medical care and support services. 

Eligibility for Ryan White Program services is established at intake and is reviewed annually for as long as the client receives services. Eligibility for Ryan White Program services is based on four requirements: medical documentation of HIV status, proof of residence in Alameda County or Contra Costa County, confirmation of income eligibility, and demonstration that the client is uninsured or covered by other sources of medical insurance. 

Proof of HIV status may include:

• HIV positive lab results (antibody test, qualitative HIV detection test, or detectable viral load). Lab results with undetectable viral loads that do not indicate a positive HIV diagnosis will not be accepted during initial enrollment as proof of positive HIV diagnosis; 
• A Letter of Diagnosis from the client’s physician or licensed healthcare provider. Acceptable letters of diagnosis must be on the physician’s or healthcare provider’s letterhead, and must include the physician’s or provider’s national provider identifier (NPI) number or California license number as well as the physician’s or licensed healthcare provider’s signature verifying the client’s HIV status; or
• Diagnosis form (DCPH 8440) completed and signed by the client’s physician or licensed healthcare provider. Other diagnosis forms are also allowed, as long as they confirm the client’s HIV diagnosis.

Proof of residence may include: 

• Copy of a signed lease with the client’s name and address; 
• Copy of a current or previous month’s utility bill or rent receipt with the client’s name and address; 
• Copy of a Supplemental Security Income (SSI) benefits letter addressed to the client at their stated address;
• Copy of a benefits letter from another public agency that is currently providing income to the client, addressed to the client at their stated address;
• Notarized letter from a friend or family member, confirming the client’s name and their address;
• “Verification of residence” letter on official letterhead confirming the client’s placement in a shelter, transitional housing facility, residential treatment program or other similar housing facility/program; or
• Client self-attestation that they are homeless or living in a temporary housing situation that cannot be documented.

Proof of annual income can be demonstrated by:

• Copies of current pay stubs with the client’s name and year-to-date gross income. For clients whose employment is temporary, part-time, or seasonal, the medical case manager or designated staff should request as many pay stubs as are needed to obtain a calculation that takes income fluctuations into account; 
• Copy of the client’s most recent W-2 form;
• Copy of the client’s benefits letter from the Social Security Administration, Alameda County Social Services Agency, Veterans Administration, State Employment Development Department, or other equivalent agency providing income support; 
• Signed and notarized letter from a person providing the client with financial support, including the amount and frequency of support payments; 
• Proof of active Medi-Cal benefits; or
• Client self-attestation that they have no income or that their income cannot be documented (e.g., day labor).

The Ryan White Program is the “payer of last resort.” Enrollment in medical insurance coverage can be demonstrated by:

• Copy of the client’s insurance card, including enrollment cards for ADAP and OA-HIPP; 
• Copy of report obtained from the Medi-Cal eligibility system; 
• Proof of coverage provided by a private insurance company, such as Covered California or a COBRA program (post-employment, time-limited coverage); or
• Client self-attestation of uninsured status.

Enrollment And Intake Procedures

To record the new client’s personal, medical and demographic information, the medical case manager uses a standard form designed by the Alameda County Public Health Department, and/or an intake form that has been modified by the clinic or agency to obtain additional information for assessment purposes and/or for reports related to Ryan White Program activities.

During the enrollment and intake process, the medical case manager also shares and explains clinic/agency procedures and provides a thorough description of the legal protections that clients are entitled to when they receive Ryan White Program services. These procedures and protections are described in writing, and cover such issues as client rights and responsibilities, informed consent to treatment, HIPAA protections, the release and exchange of information, confidentiality and its limits, the security of medical and case management records, and the extent of information-sharing among care/treatment team members. In addition to obtaining relevant releases of information, the case manager explains the Share/Non-Share Consent Form and reviews the agency’s grievance procedure and the process for filing a complaint.

All forms must be signed and dated by the client and witnessed by the medical case manager, with signed copies given to the client and maintained in the client’s record. If necessary, an interpreter (telephonic or in-person) should be used to provide enrollment information in the client’s primary language.

The Intake Interview

The process of establishing rapport and building a therapeutic relationship begins during the intake interview. The medical case manager’s role is to facilitate the creation and maintenance of a safe space where the client can ask questions, share their concerns, describe the services they are seeking, and safely disclose their current circumstances and needs, as well as their goals for the future. 

The medical case manager and the new client should engage in a conversation about the purpose and process of case management, the role of the medical case manager, the client’s expectations, appropriate boundaries, and the framework that will define the work and the relationship between the client and their case manager. The client’s expectations should be explored and clarified. The medical case manager should emphasize the importance of maintaining contact, keeping scheduled appointments, and following up on referrals. 

Using active listening and open-ended questions will encourage the client to speak freely, and will help the medical case manager obtain information about issues and possible challenges that are affecting the client’s health and quality of life, as well as any emergencies or crises that the client is currently experiencing. This information will help the medical case manager in assessing the client’s needs and identifying workable strategies for addressing them. 

During the interview, the medical case manager should also obtain and document healthcare information related to linkage and retention in care, provider visits, labs, medication adherence, and viral load. Challenges related to medical care and medication adherence should be discussed and possible solutions should be identified and explored if appropriate. 

At the end of the first meeting, the medical case manager should describe the next steps in the process, i.e., completing the written assessment(s), developing and periodically reviewing the care plan, referrals to resources, the frequency of meetings, and the date and time of the next appointment. 

Assessment

The medical case manager conducts the comprehensive assessment as they begin their work with a new client. Information shared by the client during the assessment interview provides the medical case manager with a framework for evaluating and addressing the client’s needs, assessing the client’s strengths and resources, providing appropriate linkages to available services, coordinating care, and working with the client to develop goals that will be included in the care plan.

At its best, participation in the assessment process may also provide an opportunity for the client to overcome any reluctance to share deeply personal information, gradually build a safe and trusting relationship with their case manager, and ultimately feel confident that their case manager will support and assist them. In a successful client–case manager relationship, the client will come to view their case manager as a trusted ally they can turn to when they need help and support.

Medical case management services under the Ryan White Program are intended to improve healthcare outcomes and to support the client in moving toward self-sufficiency. The assessment process should provide the medical case manager with the detailed information needed to assist the client in achieving the following:

• accessing and maintaining a connection to HIV primary healthcare providers 
• maintaining adherence to HIV treatment
• obtaining the resources and services needed to address emergency, short-term, and long-term needs
• stabilizing their existing support system and identifying additional sources of support 
• establishing a realistic plan for achieving future goals that support optimal health and improved quality of life 

The comprehensive assessment includes questions about the client’s needs and concerns related to their HIV diagnosis, as well as their need for services that address unmet medical, mental health, physical, spiritual, psychosocial, housing, and economic needs. The assessment is also designed to elicit information about the client’s resources and strengths, their perceived and actual social supports, and the extent to which they believe they are supported by their family and community. While the initial assessment is conducted following the new client’s intake interview, assessment should be viewed as an ongoing process, with documents that are routinely updated when previously undisclosed information is shared, or when the client’s circumstances change. 

Assessment is typically conducted in a face-to-face interview or series of interviews, using one or more assessment instruments, including the assessment form developed by the public health department. Many clinics/agencies have adapted the standard assessment form to elicit additional information for a more detailed picture of the client’s history and needs. 

The Ryan White HIV/AIDS Program Standards of Care for Medical Case Management that are currently proposed for use in the Oakland Transitional Grant Area (TGA) state that, at minimum, an assessment should provide the medical case manager with information related to the following issues and needs:

• Benefits counseling and insurance coverage
• Medical care, including HIV care, primary care, and medical referrals
• Adherence to medication and appointments
• Mental health services, including the need for psychiatry and psychotherapy
• Substance use history and the need for substance use treatment and addiction support, including harm reduction support
• Health education, health promotion, and disease prevention
• Usage of core and support Ryan White Program services
• Sexual health behaviors
• Family composition and relationships
• Evaluating and improving social and community support systems
• Housing navigation assistance
• Transportation coordination
• Risk reduction counseling
• Partner notification and disclosure
• Environmental and interpersonal safety
• Legal support
• Access to food resources and nutritional assessment
• Dental care
• Language and cultural needs
• Financial assistance including emergency financial aid
• Spiritual care

A comprehensive initial assessment helps the medical case manager understand the client’s current capacity to independently meet their needs for treatment and support services, how much the client’s social support network can help the client meet their needs, and the areas where the client needs assistance in securing services. The assessment should include a process for screening for risk behaviors, as well as questions that assess the client’s need for HIV/AIDS education and support in disclosure of their HIV status.

The medical case manager should also ask which agencies or programs are already involved in the client’s treatment or care, e.g., their primary medical provider, AIDS service organizations, other treatment programs, safety net programs, and agencies in the community that provide social services and/or case management. This information will assist the medical case manager’s efforts in care planning and coordination.

Psychosocial Assessment: At some clinics/agencies, the initial assessment process includes a thorough psychosocial assessment. A psychosocial assessment provides detailed information about the client’s capabilities and resources, the role(s) they play in intimate relationships and in their family and community, the quality of their interpersonal relationships, and the issues they confront in dealing with their social environment. Factors such as educational background, vocational skills, employment, financial issues, legal concerns, level of social functioning, and involvement in social, religious, leisure and community activities, are also assessed, as are the client’s physical functioning, household responsibilities, and basic needs. 

The medical case manager also uses the psychosocial assessment to evaluate the client’s coping skills and to explore issues related to mood, self-esteem and self-efficacy, and current mental health challenges, including problematic substance use. Family background and composition, trauma history (including childhood abuse and neglect), and past mental health history are also examined, along with issues related to past or current sexual abuse or exploitation. 

Assessing Housing Needs: 

The Ryan White Program, as administered in the Oakland TGA, requires that clinics/agencies provide quarterly reports on the number of clients who are currently literally homeless (living in an emergency shelter or a setting unsuitable for habitation); housed temporarily in institutional settings; insecurely housed; rent-burdened; or securely housed in housing they can afford. 

If the client has unmet housing needs, a separate housing assessment should be completed. For a list of questions that should be included in a housing assessment to assist with the client’s housing search, please refer to the Appendix. 

Knowledge of the client’s current housing situation and housing history provides the medical case manager with the detailed information they will need to make appropriate referrals to agencies that provide housing navigation, housing case management, or housing-related legal services, and to assist the client in applying for affordable or low-income housing, including subsidized housing funded by the HOPWA program. 

Acuity Scoring: The assessment should also provide the medical case manager with enough information to establish the client’s acuity level based on the Client Acuity Scale Worksheet developed by the State of California Office of AIDS. The acuity scale is used to determine the frequency and intensity of case management services that an active client should receive. (An active client is defined as a client who has had successful contact with medical case management services within the last six months). 

The Acuity Scale has four levels based on the client’s level of functioning, their level of need, and the intensity and frequency of case management services they are likely to require.

• Acuity Level 1 includes high-functioning clients seeking assistance in meeting only one or two needs and who require minimal or no follow-up. 

• Acuity Level 2 includes clients who are generally functioning well but might have several complex needs. These clients typically require relatively limited help in maintaining their health and activities of daily living. Services at Level 2 could include treatment adherence counseling, help coping with a new HIV diagnosis, partner services, referral to outpatient substance use treatment, assistance with applying for health insurance, etc.

• Acuity Level 3 clients have “multiple urgent needs and/or extensive problems” and require more frequent contacts with their case manager. They commonly have difficulty following through with their care plan without case manager involvement. Interventions that might be required at Level 3 include crisis intervention as well as assistance in addressing financial insecurity (including the need for emergency financial aid), immediate violence or safety issues, risk of loss of housing, and support in managing complications from low medication adherence, advanced disease states, and recent emergency room visits or inpatient hospitalizations. 

• Acuity Level 4 clients are defined as “severely impacted” and typically require immediate, intensive and ongoing assistance such as crisis intervention and stabilization, help with managing a disabling condition, and interventions related to recent incarceration, homelessness, chronic food insecurity, and lack of income or significant loss of income. Patients at Acuity Level 4 might have an immediate need for a higher level of care such as home healthcare, residential substance use treatment, or inpatient psychiatric treatment. 

Because assessment interviews are lengthy and detailed, and because assessment questions can often feel intrusive to the client, it is important that the medical case manager develop an interview style that is client-centered, interactive, respectful, non-judgmental, supportive, and compassionate. It is important to recognize that there is an inherent power imbalance between the person in a professional role who asks questions of an intimate nature and the person who is expected to disclose numerous, often sensitive, details about their current circumstances or life history. New clients may not feel safe volunteering personal information about themselves or asking questions of the medical case manager that they feel are embarrassing. Clients may also have a hard time expressing their feelings or admitting their needs in conversation with a stranger. 

The medical case manager should also be aware that the client is likely to have experienced multiple traumas, such as traumas around their HIV diagnosis and HIV stigma; traumas from mistreatment based on their gender identity or sexual orientation; traumas that are personal, familial, or multi-generational; and childhood traumas that are referred to as ACEs (Adverse Childhood Experiences). These traumas are very often compounded by a history of community trauma based on race, ethnicity, and poverty. 

Medical case managers should have an understanding of trauma informed care and how it should be integrated into their work with clients. The guiding principles of trauma informed care are safety, choice, collaboration, trustworthiness, and empowerment. In applying these principles to the process of intake and assessment, it is essential for the medical case manager to convey to the client that they are welcomed, respected, and supported, and that they are in an environment where their emotional and physical safety is of paramount importance. When asking assessment questions that could require the disclosure of the client’s past trauma history, the case manager should be aware of the risk of inadvertently triggering re-traumatization, and should be attuned to signs that the client might be experiencing emotional and physical stress triggered by re-experiencing a traumatic event. Approaching the assessment process with emphasis on empathy, absence of judgment, and willingness to proceed at the client’s own pace will help lay a foundation for a trusting and collaborative relationship that will support the process of setting and monitoring care plan goals. 

The Care Plan

The medical case manager’s primary role is to ensure that the client has access to the services and care they need. The care plan provides a structure to guide the case manager’s work with the client. In addition to measurable long- and short-term goals, the care plan identifies which resources and services the client should access in order to address their needs and achieve the care plan goals.

The care plan should be the product of (1) the information learned about the client’s circumstances and needs during the comprehensive assessment process and (2) an ongoing dialogue between the medical case manager and the client about the client’s concerns and unmet needs. While the case manager should not support or encourage setting clearly unrealistic goals, the client’s personal objectives should be part of care plan goals. To increase client motivation and engagement in the process of working toward their goals, they should be involved to the greatest extent possible in developing their care plan. 

As the relationship between the client and case manager develops, and as expectations around self-disclosure increase while developing care plan goals, there are several interpersonal guidelines that should be observed. Consistent boundaries are fundamental to the development of trust, as is clear communication about what should be expected in the relationship between the client and the case manager. Assumptions about the client’s family relationships that could be grounded in cultural experience should be approached carefully, and sensitivity should be exercised in inquiring about the client’s social or family relationships. Careful use of language is also important, as words that convey expertise can be inadvertently or deliberately used to suggest the existence of a hierarchy. Words and phrases have different meanings in different cultures, leading to possible misunderstandings and discomfort on the client’s part.

Like the assessment, the care plan should be considered as a “living document” that should be reviewed regularly and modified as needed. Periodic updates should record progress made at each step toward achieving the care plan goals. When the client has been unable to work on an agreed-upon step, the case manager and client should engage in a conversation about the barriers to working on the step or task and discuss ideas for addressing the issue(s). In addition, the plan should include contingency plans for when services or resources are unavailable.

Developing Care Plan Goals:

The care plan consists of both long-term and short-term goals. By definition, a goal is a broad, general statement of a desired outcome. A long-term goal reflects a goal that the client wishes to achieve, e.g., reducing social isolation or making life-style changes that will lead to improved health. A short-term goal typically addresses an immediate need such as crisis stabilization, loss of income, or imminent risk of loss of housing. In either case, the goal is accompanied by a series of tasks the client must complete or steps they must take in order to meet the goal. Care plan goals should always address the unique issues the client is confronting and should state as clearly as possible what must be done to accomplish the goal. 

It is important to remember that work toward achieving goals “belongs to” the client. A goal could be written using phrases such as: “client will reduce (or increase, alleviate, or resolve, etc.) a given circumstance.” A goal should never be written in a way that suggests that the case manager is responsible for attaining the goal on the client’s behalf. However, it is acceptable to state that the case manager will support the achievement of the client’s goal through activities such as linkage to a needed resource or service, follow-up and case coordination, assistance in navigating a complex system, problem solving, emotional support, or advocacy. In this case, the case manager’s actions in facilitating the achievement of the client’s goals would be included among the steps being taken by the client. For example:

Care plan goals should be measurable and clearly defined. The acronym “SMART” is often used to define goals that are viable and attainable within a certain time-frame. SMART stands for specific, measurable, achievable, relevant, and time-bound. When a goal is specific, it clearly states what will be accomplished. A measurable goal is quantifiable, making it possible to track progress and make adjustments when needed. Achievable goals are realistic and likely to be accomplished, and relevant goals are inherently important to the person(s) setting the goal. Finally, when a goal is time-bound, there are clearly defined timeframes for completing each of the tasks leading to the goal’s accomplishment.

Throughout the process of developing the care plan, there should be an honest discussion about the goals the client believes are most important, the goals they believe are achievable, and the extent to which they feel ready to participate in the process of working toward achieving those goals. Setting defined goals and working to achieve them involves the client developing a sense of ownership, as well as a commitment to behavioral change. 

The case manager should be available to support the client as they identify where they are in terms of readiness for change. Care plans and interventions can then be developed accordingly. The “stages of change” model acknowledges that change is “an internal state influenced by external factors,” and adds that clients often make several attempts at change before they are able to achieve a stable change in their behavior.

The following is a quotation from The HIV/AIDS Case Management Services Protocol, written by the staff of the County of Los Angeles Department of Public Health. It expresses perfectly the mixture of acceptance, grace, flexibility, and optimism that is found in the most effective work done by medical case managers:

“Achieving small steps can be recognized as progress. Steps can be celebrated as successes independent of achieving the client’s goal. Obstacles and barriers can assist in re-thinking steps needed to achieve client goals. . . . 

Appropriate action, no matter how small, results in change and growth. Change happens one step at a time. Our task is to help clients keep taking these steps, however small, each and every day in order to achieve their goals, which often takes some time. ‘Today I will do one thing’ reminds clients to keep taking these small steps even when they don’t feel like it. One small step taken every day is progress. When we manage to accomplish even one small thing that we set out to do each day, we can feel we are making progress towards our goal.”

Linkage To Services

Care plan goals almost always include steps that involve referrals to programs or services that will address the client’s unmet needs. The medical case manager plays a vital role in informing the client about available resources in the community and facilitating the client’s access to services. The medical case manager may also be called upon to advocate for the client if the client’s access to services is delayed or denied. 

If possible, the medical case manager should establish networking relationships with staff of the resource agencies that are commonly used for client referrals. This is useful for following up on referrals and learning the referrals’ outcome. Information about the agency’s hours, location, and telephone number/email address should be confirmed and updated. The referral process will be easier for the client to navigate if they are well-informed about the service they are being referred to, and have a clear sense of what to expect when they visit the agency for an appointment.

At a minimum, before offering a referral to a program or service, the medical case manager should verify that the client meets the program’s eligibility criteria. The medical case manager should describe the services offered by the resource agency and explain whether the resource is immediately available or if the agency maintains a wait list. The medical case manager should also carefully assess the client’s capacity to independently seek and apply for services, and whether the client will need the medical case manager’s support in attending agency appointments and applying for services.

The following issues should be discussed with the client as the referral is being offered:

• Document readiness: Does the client have the documents needed to complete the agency’s application process?
• Access: Does the client have transportation needs, such as paratransit services? Does the client need assistance with paying for transportation? Does the client have mobility issues that will need to be accommodated?
• Communication: Will the client require interpreter or translation services that need to be arranged in advance? Does the client have disabilities related to vision or hearing? Is the client living with a learning disability or severe mental health issue? Will the client’s literacy issues warrant the medical case manager’s help with reading applications and filling out forms?

The medical case manager should ensure that the client has realistic expectations about the resources that are available in the community, whether these resources are relatively easy to access, whether the resource or service is time-limited, and how long they might have to wait in order to receive the resource. This is especially important for clients who are seeking low-income housing and who will face issues with being selected for placement on wait lists.

Documentation And Note Taking

Most medical clinics and AIDS service organizations that receive Ryan White funding also receive funding from other federal or state sources such as Medicare and Medi-Cal, as well as funding from foundation grants or other government programs. Funding sources will likely have differing requirements for reporting on program goals, providing demographic or statistical information, documenting client contacts, and tracking medical information related to lab tests and treatment adherence. For the medical case manager, reporting their work with clients in multiple databases can be complex and time-consuming.

There are expectations and requirements for documentation and note-writing that apply in almost all cases. First, medical case managers should receive sufficient, ongoing training for a solid working knowledge of the large databases that are used in most medical settings (EPIC is a good example). They should also be trained in the procedures for entering client information in the database used by the Ryan White program. Medical case managers should ask administrative and supervisory staff for ongoing training and direction, and should also take advantage of training opportunities offered by the public health agency that administers local Ryan White programs.

When recording information about client contacts, results of outreach to referral sources, or progress toward meeting care plan goals, the following common-sense practices should be observed:

• Notes should be written and entered in the client record as soon as possible after the contact takes place. It can be time-consuming to reconstruct the content of meetings and phone calls long after the fact. (And remember that “if it isn’t documented, it didn’t happen.”)
• The medical case manager should consult with their program supervisor if there are questions about how notes should be formatted and/or the level of detail that is expected. 
• Client information that will be needed for program monitoring or preparation of periodic data reports should be entered accurately in the client record so that it is readily available when needed.
• In addition to charting in the client’s record, the medical case manager might want to keep a separate log for tracking referrals to agencies providing support services. Information could include the referral date, name of the program/agency, the service being sought, the staff person contacted, and the outcome of the referral. Applications for housing could be recorded in a similar log.
• The medical case manager should be mindful of their use of language when entering notes in the client’s record. First, writing in excessive detail is not the best use of time. Second, with many clinics now making client records available for review by the client or their advocate, notes should be written using language that is non-judgmental, factual, and free of opinions.
• Issues such as counter-transference (the case manager’s feelings and opinions about the client and how their work with the client is affected) should always be discussed during supervision but recorded in a personal, private notebook that will not be seen by others.

Section 4: HIV History & Stigma

Author: Marsha Martin

History of HIV/AIDS

Looking Back, Looking Forward—and Some Places in Between

AIDS, or acquired immune deficiency syndrome, was first recognized in 1981. By 1983, HIV, the human immunodeficiency virus, was identified as the virus that caused the syndrome. By the end of the 1980s, it was clear that the virus had spread quietly and undetected throughout most of the world. By 2024, HIV/AIDS has transitioned from the leading cause of death among gay men to become one of the leading causes of death worldwide for adolescents and women of childbearing age. Currently, nearly 37 million people have HIV worldwide, with an estimated 1.7 million new cases every year. In the United States today, there are more than 1.2 million people living with HIV, and there are more than 35,000 new cases each year.

When the first few cases of AIDS emerged in the 1980s, people believed it was a disease only among men who had sex with men. Initially named GRID (gay-related infectious disease), the disease was later renamed AIDS and is now commonly referred to as HIV. 

A lot has changed, and yet, unfortunately, a lot has remained the same. Back then, the response was care and compassion, as medical treatment was limited and there was very little else available. From those early days of compassionate caring emerged a human services response that changed the world of human services delivery to include rights, protections, and community advocacy. 

The early gay AIDS/HIV epidemic ushered in an entirely new set of community-based services and agencies: AIDS service organizations; AIDS crisis hotlines; AIDS legal services, AIDS hospice centers; AIDS counseling, testing, and safer sex programs; AIDS food and nutrition programs; AIDS emergency funds; and AIDS transportation, specialized housing, case management services, and buddy programs. These services were most often located in predominantly “gay” neighborhoods, such as San Francisco’s Castro, New York City’s Village, and Los Angeles’ Westside. Today, there are services for people living with HIV/AIDS in every state and U.S. territory, in major cities and moderate-sized towns across America. Globally, HIV/AIDS services exist everywhere imaginable, thinkable, doable, and reachable.

The challenge in the early days, in cities like New York, Los Angeles, San Francisco, Miami, Philadelphia, and Washington, D.C., and their shadow city equivalents (Newark, San Diego, Oakland, Ft. Lauderdale, Camden, and Baltimore), was that not only gay white men contracted AIDS. People who use drugs, women of childbearing age, fathers, mothers, daughters, sons, sisters, brothers, transgender and non-binary people, commercial sex workers and their clients, newborn babies and their breastfeeding mothers, adolescents exploring their identities, and young adults newly married also contracted AIDS. Many were Black and Hispanic/Latinx and had limited information and limited access to services, resources, and/or supports. It would be nearly twenty years, not until 1998, before the Minority AIDS Initiative would be funded to address the disparities and needs of the broader Black/African American and Hispanic/Latinx communities.

The HIV/AIDS epidemic in the U.S. consists of several separate and sometimes intersecting epidemics. There is the generalized epidemic, where HIV is firmly anchored in pockets of the general population. There is also the concentrated epidemic, where HIV is transmitted among certain populations yet remains concentrated and does not significantly move into the general population.

Looking forward, we need to recognize that HIV continues to have a disproportionate impact on racial and ethnic minorities, gay and bisexual men, other men who have sex with men, transgender women, commercial sex workers, and people who use drugs. Oakland, for example, has both a small generalized epidemic among its Black/African American and Hispanic/Latinx populations and a concentrated epidemic largely among gay, bisexual, and other men who have sex with men. 

We must remember that HIV testing is important as an entry point in both generalized and concentrated epidemics—for both treatment and prevention services. Knowing one’s status can direct a person living with HIV toward the appropriate services: prevention and/or treatment. Yet many people with HIV are unaware they have the virus, as they have not been tested. Regular and routine testing is essential to ending the HIV/AIDS epidemic. If you are HIV negative, there are services designed to help you remain negative. If you are HIV positive, clinical treatment services are available to help reduce the amount of virus in the body to undetectable levels, thereby making it impossible to transmit HIV through sex.

Unlike at the beginning of the AIDS epidemic, today there are effective medicines (and ADAP) to make treatment and a long, healthy life available for many people living with HIV.  And while still more advocacy and effort are needed to make medicines available to ALL, it is also important to understand that every person with HIV should be in care and on treatment. 

Antiretroviral therapy (ART) greatly improves long-term outcomes for people with HIV, reducing HIV-related morbidity and mortality. We used to say we could not treat our way out of the HIV/AIDS epidemic. Well, maybe we can: ART is an important component in HIV prevention. Today’s treatment guidelines recommend initiating treatment as soon as a positive HIV diagnosis is verified. Research continues to show no risk of transmission through sex when an individual with HIV stays undetectable on ART. Still, many people with HIV are not in care, on treatment, or virally suppressed. We must do better. Responding to HIV is everyone’s business.

Today, the U.S. government invests significantly in the domestic and global HIV response—providing resources to support ongoing disease surveillance, prevention, care, support services, and health insurance coverage. Community-based organizations provide a majority of community health and care management services for people affected by. When HIV began, we had only ourselves and our love for one another. Now, 40 years in, we have extraordinary life-saving medicines, top-notch clinical care, community-led care services and support, and still, we have our love for one another. It is the glue that has kept us going together. It is also the glue that will keep us going together until we reach the end. Let’s do our best to get to the end in our lifetime.

HIV Stigma

Stigma is a set of negative and unfair beliefs that a society or group of people holds about something. In the context of HIV, these attitudes and beliefs often originate from the early days of the epidemic, when individuals with HIV were visibly aging and wasting away in a matter of weeks or days after diagnosis. During this time, many people with HIV developed Kaposi Sarcoma, a cancer that left bruise-colored markings on the skin, further exacerbating fear and misunderstanding about the disease.

The CDC defines HIV stigma as “negative attitudes and beliefs about people with HIV. It is the prejudice that comes with labeling an individual as part of a group that is believed to be socially unacceptable” (CDC, 2024).

Why do we care about HIV stigma?

HIV stigma is a critical issue because it can lead to discrimination, where individuals with HIV are treated differently due to their status. This discrimination can take the form of social ostracism, denial of services, and even physical violence. HIV stigma and discrimination significantly impact the emotional well-being and mental health of people living with HIV. 

People with HIV often internalize the stigma they experience, absorbing the negative stereotypes about people with HIV and applying them to themselves. Internalized stigma can lead to fear of disclosure and subsequent discrimination or judgment, along with negative self-image, shame, isolation, and despair. Such feelings can deter them from getting tested and accessing HIV prevention or treatment services (CDC, 2024).

How can stigma impact HIV prevention efforts?

Stigma can significantly hinder HIV prevention efforts. When individuals fear being stigmatized, they may avoid getting tested for HIV, using preventive measures such as pre-exposure prophylaxis (PrEP), or seeking information about safe practices. This avoidance perpetuates the spread of HIV, as undiagnosed individuals may unknowingly transmit the virus to others (CDC, 2024).

How does stigma affect access to healthcare for people with HIV?

Stigma can create barriers to healthcare access for people with HIV. Individuals who fear being judged or discriminated against may avoid seeking medical care, resulting in delayed diagnosis and treatment. Healthcare providers must create a welcoming and non-judgmental environment to ensure that people with HIV feel safe and supported when accessing services (Parker & Aggleton, 2003).

What role does public perception play in HIV stigma?

Public perception plays a crucial role in HIV stigma. Misconceptions and lack of knowledge about HIV transmission, treatment, and the lives of people living with HIV contribute to negative attitudes and beliefs. Public education campaigns that provide accurate information about HIV can help shift these perceptions, reduce stigma, and encourage supportive behaviors (UNAIDS, 2023).

What are some effective strategies to reduce HIV stigma?

Effective strategies to reduce HIV stigma include public education campaigns, advocacy for anti-discrimination laws, and the promotion of positive portrayals of people living with HIV. Community-based organizations can also play a vital role in providing support and resources to individuals affected by HIV and educating the broader public about the realities of living with the virus (UNAIDS, 2023).

How can individuals help reduce HIV stigma in their communities?

Individuals can contribute to reducing HIV stigma by educating themselves and others about HIV, having open conversations about HIV, and standing against discriminatory behaviors. By fostering an inclusive and supportive community, individuals can help create an environment where people with HIV feel valued and respected. Everyone can contribute to stopping HIV stigma by being intentional and thoughtful in their word choices—for example, by using neutral phrases like “living with HIV” instead of the more negative term “HIV infected.” By using supportive language when talking about HIV, we can help reduce stigma and discrimination, making it easier for individuals to seek testing and treatment without fear of judgment or isolation.

References: 

• Centers for Disease Control and Prevention (CDC). (2024). HIV Stigma and Discrimination. Retrieved from CDC website.
• Merriam-Webster. (2024). Stigma. Retrieved from Merriam-Webster website.
• Parker, R., & Aggleton, P. (2003). HIV and AIDS-related stigma and discrimination: a conceptual framework and implications for action. Social Science & Medicine, 57(1), 13-24.
• UNAIDS. (2023). Global HIV & AIDS Statistics — Fact Sheet. Retrieved from UNAIDS website.

Section 5: Alameda County HIV Epidemiology

Author: Megan Crowley

As of 2022, 6,286 people with a confirmed HIV diagnosis are living in Alameda County, or approximately 1 in every 270 residents. The county’s population of people living with HIV (PLWH) reflects both national trends in HIV epidemiology and the region’s demographic diversity. Several key communities are disproportionately impacted by HIV, including Black and Latine residents, and men who have sex with men. The local data summarized below provide important context to help funders and service providers prioritize their efforts to have the greatest impact on individual health and reduce the spread of HIV in the community. 

Alameda County Epidemiology 

Race

The local HIV epidemic has had devastating consequences for Black populations. In 2022, Black residents made up 37% of PLWH in Alameda County, despite being only 11% of the broader population—an overrepresentation of over 300%. Black residents also made up 28% of new HIV diagnoses between 2020 and 2022, showing a slight decline in incidence for this population.

While Latine residents are only slightly overrepresented among PLWH compared with the general population (24% vs. 22%), they make up the largest proportion of new HIV diagnoses (35.1% between 2020 and 2022). This reflects a disturbing trend in recent years and highlights the importance of culturally and linguistically appropriate prevention services and public health messaging.

White (non-Hispanic) people represented approximately 27% of PLWH and 15% of recent new diagnoses. Though these are significant proportions, white people are not overrepresented among PLWH overall, unlike Black and Latine PLWH. Similarly, Asian and Pacific Islanders, who make up 35% of Alameda County residents, are underrepresented in both PLWH (7%) and new diagnoses (9%). 

Gender and sexual orientation

Approximately 84% of PLWH were assigned male at birth while 16% were assigned female at birth. While still a minority of the overall population, cisgender women are a much higher proportion of PLWH in Alameda County compared with other counties in California (e.g., 11% in Los Angeles County and 6% in San Francisco County). Historical data limitations have made it difficult for Alameda County to accurately calculate the impact of HIV on transgender residents, but it estimates that 2% of PLWH are transgender women.

Over two thirds (67%) of the county’s PLWH acquired HIV through male–male sexual contact, while over 13% acquired HIV through heterosexual contact. Combined with prevalence estimates for transgender women, these statistics demonstrate the disproportionate impact of the epidemic on LGBTQ+ communities and the importance of service providers who explicitly welcome clients of all sexual orientations and gender identities.

Age

Over half (57%) of PLWH in Alameda County are age 50 or older, demonstrating the effectiveness of current treatments in extending life expectancy to near-normal levels as well as the importance of service providers who are adept at serving older adults. Conversely, less than 6% of PLWH are ages 13–29; however, nearly 24% of people newly diagnosed with HIV between 2020 and 2022 were in this age group. This comparatively high incidence underscores the importance of developmentally and generationally appropriate prevention messages.

People Who Inject Drugs

Approximately 6% of PLWH are believed to have acquired HIV through injection drug use, while an additional 6% may have acquired HIV through either injection drug use or male–male sexual contact. While these numbers are comparatively lower among newly diagnosed PLWH (3% and 2%, respectively), the opioid epidemic is cause for great concern regarding the role of injection drug use in the future spread of HIV. Goals to end the HIV epidemic must include a focus on harm reduction and better support for people who use drugs.

Perinatal Infections

Approximately 0.5% of PLWH (32 total) acquired HIV perinatally (from a parent with HIV during pregnancy, childbirth, or breastfeeding). Many of these transmissions occurred decades ago, before effective treatments were widely available. From 2020 to 2022, no perinatally acquired cases were reported in Alameda County, highlighting the great strides made in reducing the risk of this form of transmission since the early days of the epidemic. 

Definitions

• Epidemiology: The study of the incidence and distribution of diseases and other factors related to health. Epidemiology is focused at the population level rather than the individual level. 
• Prevalence: The number of people in a population who have a particular characteristic (such as a disease). Usually, prevalence is defined by a specific timeframe and geographical area, e.g., total number of people known to be living with HIV in Alameda County as of 12/31/2022. 
• Incidence: The number of people in a population who were newly counted as having a disease or other characteristic in a specific timeframe and geographic area, e.g., total number of people living in Alameda County newly diagnosed with HIV during 2022. 
• Disparity: When a particular subpopulation is more or less likely to have a particular characteristic than a comparison population, e.g., Black residents are more likely to have an HIV diagnosis than the general population. 

Takeaways & tips for case managers

• Local epidemiology data can provide helpful context for understanding how your agency’s clients fit into the broader population of people living with HIV in our region.

• Combined with agency-level data, epidemiology data can help with setting priorities and determining which intervention(s) may have the greatest impact.

Important links/resources

• Official Alameda County HIV Surveillance Reports can be found at https://acphd.org/data-reports/. 
  
  Note: The most recent official HIV report is a brief summary of HIV in Alameda County from 2019–2021. The data used in this section was provided by special request and is not yet publicly available. 

References: 

• Custom data report for the period ending 12/31/2022, provided by Alameda County Public Health Department
• U.S. Census Bureau Alameda County, California Population Estimates, July 1, 2023. Retrieved from https://www.census.gov/quickfacts/alamedacountycalifornia 

Section 6: HIV 101 & HIV Treatment

Author: Dr. Sami Lubega

Treatment for HIV is called antiretroviral therapy (ART). ART involves taking a combination of HIV medicines (called an HIV treatment regimen), either through daily pills, regular injections, or a combination of both. 

ART is recommended for everyone who has HIV. People with HIV get the most benefit from ART when they take it as soon as possible after they are diagnosed. ART can’t cure HIV, but HIV medicines help people with HIV live longer and healthier lives and prevent transmission to others. 

How meds work/HIV life cycle

HIV attacks and destroys the infection-fighting CD4 cells (CD4 T lymphocyte) of the immune system. Loss of CD4 cells makes it hard for the body to fight off infections and certain HIV-related cancers. 

HIV medicines prevent HIV from multiplying (making copies of itself), which reduces the amount of HIV in the body (called the viral load). Having less HIV in the body gives the immune system a chance to recover and produce more CD4 cells. Even though there is still some HIV in the body, the immune system is strong enough to fight off infections and certain HIV-related cancers.

By lowering the amount of HIV in the body, HIV medicines also reduce the risk of HIV transmission. A main goal of HIV treatment is to reduce a person’s viral load to an undetectable level. An undetectable viral load means that the level of HIV in the blood is too low to be detected by a viral load test. People with HIV who maintain an undetectable viral load have no risk of transmitting HIV to others through sex, and much lower risk of transmission during pregnancy or childbirth. This concept is known as undetectable equals untransmittable, or U=U.

HIV medications lower the amount of HIV in the body by working in combination to stop HIV from multiplying. Currently, a full regimen of ART needs at least two or more medications to be fully effective. These medications work at different parts of the HIV life cycle to stop the virus from multiplying in the body. When at least two parts of the HIV life cycle are effectively stopped by medications, the viral load in the body is suppressed and can reach undetectable levels in the blood. 

How soon should a person start treatment after testing positive for HIV?

As care teams, our goal is for a patient to start taking HIV medicines as soon as possible after being diagnosed with HIV, sometimes even before they see an HIV provider. 

Treatment with HIV medicines as soon as possible after diagnosis is known as rapid ART and is recommended for everyone with a new HIV diagnosis. This is because studies have found that people have fewer health complications when they start ART as soon as possible. Studies have also found that people prefer to be offered treatment right away, rather than waiting until after their first set of medical appointments with an HIV provider. 

Even if someone does not start ART immediately, getting on medications when they are ready (or getting back on medications after being off of them) helps people with HIV live longer, healthier lives. 

Medication classes

There are many HIV medicines available for ART regimens. The HIV medicines are grouped into seven drug classes according to which stage of the viral life cycle they interrupt.

The choice of an HIV treatment regimen depends on a person’s individual needs. When choosing an HIV treatment regimen, people with HIV and their healthcare providers consider many factors, including the individual’s preferences, other medical conditions, and potential drug interactions between HIV medications and their current medications.

For a detailed list of all FDA-approved medications with pictures, click here: https://www.hiv.uw.edu/page/treatment/drugs 

Medication Adherence

For people with HIV, treatment adherence means:

• Starting HIV treatment
• Taking HIV medicines as prescribed (also called medication adherence)
• Attending medical appointments

Adherence to treatment is a key part of staying healthy with HIV.

Why is medication adherence important?

Because HIV requires lifelong treatment, it is important for people with HIV to regularly take HIV medicines and get lab monitoring to make sure their treatment regimen is keeping the virus under control. During regular medical appointments, healthcare teams can also recommend resources to help people deal with any issues that may interfere with medication adherence. 

Taking HIV medicines every day prevents HIV from multiplying, which lowers the risk that the virus will mutate and produce drug-resistant HIV. Skipping HIV medicines allows HIV to multiply, which raises the risk of drug resistance and HIV treatment failure.

When a person is not taking any HIV treatment regimen, HIV can destroy the immune system. A damaged immune system makes it hard for the body to fight off infections and certain cancers.

Adapted from: https://hivinfo.nih.gov/understanding-hiv/fact-sheets/hiv-treatment-adherence 

Drug resistance and treatment failure

What is HIV drug resistance?

Once HIV enters the body, the virus begins to multiply. As HIV multiplies, it sometimes changes form (mutates). Some HIV mutations that develop while a person is taking HIV medicines can lead to drug-resistant HIV.

Once drug resistance develops, certain HIV medicines that previously controlled the person’s HIV are no longer effective. In other words, those HIV medicines cannot prevent the drug-resistant HIV from multiplying. Drug resistance can cause HIV treatment to fail.

Drug-resistant forms of HIV can also spread from person to person (called transmitted resistance). People with transmitted resistance have HIV that is resistant to one or more HIV medicines even before they start HIV treatment.

Even if someone has some HIV drug resistance, HIV providers can usually find a new regimen that can control their HIV, but it may involve more pills or injections than non-drug-resistant forms of HIV.

What is drug-resistance testing?

Drug-resistance testing identifies any HIV medicines that will not be effective against a person’s HIV. Drug-resistance testing is done using a sample of blood. Drug-resistance test results help determine which HIV medicines to include in a person’s HIV treatment regimen.

Someone newly diagnosed with HIV may start ART without drug-resistance testing. This is because newer HIV medications usually work well to reduce viral load to undetectable quickly. If the viral load doesn’t drop as quickly as expected, then the person may need drug-resistance testing. 

If someone has been on HIV medications in the past and is about to restart treatment, drug-resistance testing might be needed to select medications that will work well for them. This may mean that rapid ART restart is not an option, since the provider needs to wait for the drug resistance test results before prescribing an ART regimen.

Once treatment is started, a viral load test is used to monitor whether the ART regimen is controlling the person’s HIV. If viral load testing shows that their HIV treatment regimen is not effectively suppressing the viral load as expected, drug-resistance testing is repeated. The test results can identify whether drug resistance is the problem and, if so, can be used to select a new HIV treatment regimen.

Treatment failure is when an antiretroviral treatment that is being used is unable to suppress the individual’s viral load. Factors that can contribute to HIV treatment failure include drug resistance or low medication adherence.

Again, even if someone experiences a treatment failure, HIV providers can usually find a new regimen that can control their HIV.

How can a person taking HIV medicines reduce the risk of drug resistance?

Taking HIV medicines the way they are prescribed reduces the risk of drug resistance. Skipping HIV medicines allows HIV to multiply, which increases the risk that the virus will mutate and produce drug-resistant HIV, causing those medicines to no longer work for that person.

When starting HIV treatment, the healthcare team should talk to patients about any issues that can make medication adherence difficult. For example, a busy schedule, lack of a safe place to keep their medications, or fear that someone will see them taking medication can all make it hard to take HIV medicines consistently. 

Once someone starts treatment, they can work with their healthcare team to find strategies to help them take their pills daily (like a pill case, medication locker, unlabelled pill bottle, phone reminder, etc.). 

Adherence is also important with injectable medications: Getting HIV medication injections on time every time is critical for those medications continuing to work. If someone will be late to get their injection or misses their injection by more than a week or two, they may need to take a pill form of HIV treatment to protect them from developing drug resistance until they can get back to their regular injections. 

If someone does develop drug resistance to one or more of their injectable medications, they may not have as many medication options available in the future. This means they may not be able to stay on injectable HIV medications of any kind, they may not be able to go back to their previous medications, and they may not have a one-pill, once-a-day option that will work for their HIV. They may have to take more than one pill every day, take pills multiple times per day, or take a combination of pills and injections instead to overcome drug resistance. 

Adapted from: https://hivinfo.nih.gov/understanding-hiv/fact-sheets/drug-resistance 

Side effects

As with most medications, HIV medicines can sometimes cause side effects. Most side effects from HIV medicines are manageable and will not cause serious problems, but a few can be serious. Overall, the benefits of FDA-approved HIV medicines far outweigh the risk of side effects. In addition, HIV medicines have been improved over the years to cause fewer side effects, making people less likely to have side effects from HIV medicines.

If someone is starting HIV medicines or if they are starting a new HIV medicine, they should discuss the possible side effects of the medication with their healthcare provider. Healthcare providers can work with people to select an HIV treatment regimen based on their individual needs. 

If someone might be experiencing side effects from an HIV medicine, help them to consult with their healthcare provider to discuss this as soon as possible. People should always call their healthcare provider before they stop taking the medicine to make sure there is a plan to keep the virus suppressed by a treatment that will work for them.

Do all HIV medicines cause the same side effects?

Different HIV medicines can cause different side effects. Importantly, different people taking the same HIV medicine may have different side effects. This can be due to differences in people’s health, differences in how medications interact, or differences in how individual bodies respond to different types of medications. 

Some side effects from HIV medicines are very common and may last only a few days or weeks. For example, nausea, fatigue, and sleep problems are some short-term side effects of HIV medicines. Sometimes this is referred to as “start-up” syndrome, and can last for several weeks after starting a new medication.

HIV medicines can also cause other side effects that may not appear for months or years after starting a medicine. For example, high cholesterol—a major risk factor for heart disease—can be a side effect of some HIV medicines. 

Some HIV medications only have a risk of side effects if people develop certain health conditions. In these cases, a medication that had been safe for someone for many years may need to be changed because their health status or other health conditions have changed.

Having another medical condition or taking other medicines can increase the risk of side effects from HIV medicines. In addition, drug-drug interactions between HIV medicines and other medicines can also cause side effects. 

You can use the Clinicalinfo Drug Database to learn more about HIV medicines and their possible side effects. For help using the Drug Database, contact a Clinicalinfo health information specialist by phone (1-800-448-0440) or email (HIVinfo@NIH.gov).

What are some ways to manage side effects from HIV medicines?

Before starting HIV medicines, a person can talk to their healthcare provider about possible side effects. Depending on the HIV medicines in their HIV treatment regimen, their healthcare provider will:

• Tell them which specific side effects to look out for.
• Give them suggestions on how to deal with manageable side effects like nausea and vomiting.
• Tell them about the signs of life-threatening side effects that require immediate medical care, like swelling of the mouth and tongue.

Once someone starts taking HIV medicines, they should tell their healthcare provider about any side effects that they are having. Their healthcare provider can recommend ways to treat or manage side effects.

In some cases, it may be necessary to change HIV medicines to stop a side effect. However, they should NOT cut down on, skip, or stop taking their HIV medicines unless their healthcare provider tells them to. 

In some cases, possible side effects can be avoided by precautionary testing before starting the medication. For example, before starting treatment with the HIV drug abacavir (ABC), the FDA recommends taking a genetic test for hypersensitivity reactions.

Fortunately, there are many HIV medicines available as alternatives to include in an HIV treatment regimen. A person’s individual needs will determine the choice of HIV medicines to replace those causing side effects.

Adapted from: https://hivinfo.nih.gov/understanding-hiv/fact-sheets/hiv-medicines-and-side-effects 

Building adherence

When someone starts HIV medications, talk with them about medication adherence. Talking with your client and their healthcare provider will help your client understand why they are starting HIV treatment and why medication adherence is important.

You can normalize ART by reminding them that: 

• treatment with HIV medicines is recommended for everyone with HIV;
• HIV medicines help people with HIV live longer, healthier lives; and
• Adherence to an HIV treatment regimen reduces the risk of HIV transmission (U=U) and drug resistance. 

How can I support a client starting a new HIV treatment regimen?

If you aren’t already a part of their healthcare provider’s team, consider asking your client to sign a release of information that will allow you to coordinate their care directly with their provider on their behalf when needed. This will allow you to talk directly with the medical team to help with any issues that are coming up. 

Encourage your client to tell their healthcare provider about other prescription and nonprescription medicines, vitamins, nutritional supplements, and herbal products they are taking, plan to take, or hope to take in the future (for example, gender-affirming hormones). Consider making the list together with the patient and providing it to the healthcare provider before or at the medical visit. 

Other medicines or products they take may interact with HIV medicines, so the healthcare provider will need that information to make the safest recommendations to avoid drug interactions. 

Encourage your client to tell their healthcare provider about any issues that might make adherence difficult. For example, people who have difficulty swallowing pills can work with their provider to avoid pills, use the smallest pills possible, or use liquid formulations for certain medications. People who do not have a safe place to keep their medications or a regular place to live can work with their case manager or provider to store medications at the clinic or in medication lockers, or get medications delivered from the pharmacy to their clinic.

Have your client describe their daily schedule to you and their healthcare provider. You and your client can work together to design a plan that fits in with their day-to-day routine, including using phone reminders, getting regular text reminders, using pill cases, and incorporating daily medication doses into other parts of their daily routines. 

Encourage your client to ask their healthcare provider for written instructions on how to follow their HIV treatment regimen. The instructions should include the following details:

• How much of each medicine to take
• When to take each medicine
• How to take each medicine (for example, with or without food)

What strategies can I suggest to help my client to stick to an HIV treatment regimen?

To help your client maintain adherence, work together to try out some of the following strategies:

• Use a 7-day pill box. Once a week, fill the pill box with HIV medicines for the entire week. Have the client bring in medications and demonstrate to the care team how they fill the pill box. 
• Consider asking the pharmacy about an option for bubble-packing medications to better keep track of daily doses.
• Make a plan to take HIV medicines at the same time every day.
• Help them set an alarm on their cell phone to remind them to take their medicines.
• Have them consider asking a family member or friend to remind them to take their medicines.
• Plan and prepare for changes in their daily routine, including weekends and holidays. If they are going away, pack enough medicine to last the entire trip or ask the medical team to help them get an early refill before their trip.
• Use an app or an online or paper medicine diary to record each dose as they take it. Reviewing the diary together will help identify the times that they are most likely to forget to take their medicines.
• Help to provide reminders and set up transportation for all medical appointments and lab appointments, if you are able. 

What should someone do if they forget to take their HIV medicines?

Generally, unless their healthcare provider tells them otherwise, they should take the medicine they missed as soon as they realize they missed it. But if it is almost time for the next dose, they should not take the missed dose; just take their next dose at the usual time. They should not take a double dose of a medicine to make up for a missed dose. Help them to reach out to a member of the medical team if there are any questions about missed doses to confirm a plan. 

Discuss medication adherence at each appointment and check in with your client to ask if they are having difficulty with their treatment regimen. Normalize issues such as forgetting doses, being confused about instructions, or concerns about the number of pills they are prescribed or their side effects by reminding them that these are common issues that case managers can help with. 

Remind them to mention any side effects they are having to their provider, and offer to share a message with their provider about any issues they bring up. Side effects from HIV medicines (or from other medicines that someone is taking) can interfere with medication adherence. 

Let their healthcare provider know if you have concerns about their treatment regimen based on what they share, what you observe, or information that you learn about their life circumstances (for example, losing housing, losing a source of income, experiencing depression, substance use, or any personal life stressors) so that you can work together as a team to explore how it might affect their ability to stay adherent to their HIV medicines. 

People often feel more comfortable sharing these details with their case managers rather than with their healthcare providers directly, or they forget to mention things to their provider because they didn’t have enough time in their medical visit. Case managers can be the critical factor in communicating important information and creating a successful medication plan with a client and their provider. 

Adapted from: https://hivinfo.nih.gov/understanding-hiv/fact-sheets/following-hiv-treatment-regimen-steps-take-and-after-starting-hiv

Takeaways & tips for case managers

To support people who are recently diagnosed in preparing for a first medical visit: https://hivinfo.nih.gov/understanding-hiv/fact-sheets/just-diagnosed-next-steps-after-testing-positive-hiv 

Important links/resources 

For the most up-to-date version of the East Bay Rapid ART protocols, visit this page: https://www.ebgtz.org/rapid/ 

References: 

• https://hivinfo.nih.gov/understanding-hiv/fact-sheets
• https://www.hiv.uw.edu/page/treatment/drugs
• https://targethiv.org/topics

Section 7: Sexual Health 101

Authors: Jessica Torres, Manuela Guevara, and Mauricio Perez

The World Health Organization (WHO) defines sexual health as “a state of physical, emotional, mental and social well-being in relation to sexuality; it is not merely the absence of disease, dysfunction or infirmity. Sexual health requires a positive and respectful approach to sexuality and sexual relationships, as well as the possibility of having pleasurable and safe sexual experiences, free of coercion, discrimination, and violence. For sexual health to be attained and maintained, the sexual rights of all persons must be respected, protected, and fulfilled.” 

According to the WHO, achieving sexual health and well-being depends on:

• access to comprehensive and high-quality information about sex and sexuality;
• awareness of potential risks and vulnerabilities associated with condomless sexual activity;
• availability of sexual health care services; and
• residing in an environment that supports and promotes sexual health.

Sexual health is part of the intake process for medical case management services. This means case managers need to equip themselves with the knowledge to engage clients in a conversation about their past, current, and/or future sexual behaviors, within a framework of respect and inclusivity. Moreover, patient-centered case management requires an understanding of sexual health that includes sexual orientation, gender identity, sexual relationships, and pleasure. It also requires an open and engaged attitude towards cultural humility and cultural competence. 

Case management and wrap-around services in the field of HIV and sexually transmitted infections (STIs) engage with a broad range of people from diverse cultural, socio-economic, and educational backgrounds. In order to successfully and fairly assess each client, case managers need to overcome the limitations and biases internalized from their own culture.

This section will review the importance of taking a sex-positive approach, sexual orientation and gender identity, as well as sexual health basics such as STIs, hepatitis C, and partner services such as PrEP/PEP and disclosure.

Reference:

1. World Health Organization. Sexual Health [Internet]. World Health Organization. 2024 [cited 2024 Jul 31]. Available from: https://www.who.int/health-topics/sexual-health#tab=tab_1

Sex-positive approach

Sex positivity generally refers to having a positive attitude about sex, respecting others’ sexual preferences and consensual sexual practices, treating sex as a healthy part of life rather than a taboo topic or something to be ashamed of, and accepting that sex and sexuality are not meant only for reproductive purposes. Sex positivity is not sex promotion; this means that sex positivity does not dictate that everyone must enjoy or be interested in sex, nor does it place moral judgments on whether people are or aren’t sexually active.

It is important for case managers to apply sex-positive principles to their work. Sex-positive approaches to use when working with clients include:

• accepting the consensual behavior of others, rather than judging
• advocating for sexual health and safer sex practices
• not assuming people only have one type of sex
• knowing that people have or do not have sex independently of their age, gender, sexual orientation, body ability, race, religion, and sexual expression

On the other hand, there are sex-negative attitudes and behaviors. Obvious or subtle signs of sex negativity may include:

• assuming anything that is not cisgender heteronormative is a sign of a mental health condition
• believing that anal sex is only for people who identify as gay
• referring to heterosexuality and being cisgender as “normal” or “natural”
• victim-blaming for sexual assault
• describing sex and sexuality to be “dirty,” “sinful,” or other negative adjectives

After receiving the news of an HIV diagnosis, many clients stop all sexual practices due to feelings of shame, fear of rejection, and concern about HIV transmission. For these clients, a sex-positive approach could include validating their feelings and acknowledging that it’s common to experience grief (as well as denial, anger, depression, and/or acceptance), while reminding them that they will be able to have a fulfilling sexual life if they choose. 

Other clients continue their sexual behaviors and may opt to engage in new behaviors. For these clients, it is important to identify ways they can enjoy sex without increasing their exposure to other STIs and/or transmitting HIV to partners. 

Talking with clients about sexual behaviors within a sex-positive and trauma-informed framework is key to providing comprehensive clinical and public health services without adding to the stigmatization and victimization of both individuals and communities.

Reference:

1. Fava NM, Fortenberry JD. Trauma-informed sex positive approaches to sexual pleasure. Int J Sex Health [Internet]. 2021 [cited 2024 Aug 5];33(4):537–49. Available from: http://dx.doi.org/10.1080/19317611.2021.1961965

“SOGI” stands for sexual orientation and gender identity. This refers to characteristics that are common to all individuals, not only those who identify as lesbian, gay, bisexual, transgender, and/or queer (LGBTQ+). 

Sexual orientation and gender identity are not one and the same. Sexual orientation refers to attraction to other people and can include physical, romantic, or emotional attraction. 

Sexual orientations can include, but are not limited to: 

• Asexual (“ace”): completely or partially free of attraction to or interest in sexual activity with others
• Queer: an umbrella term expressing a spectrum of sexual identities; formerly a slur, now reclaimed by many in the LGBTQ+ community
• Gay: attracted to people of your own gender
• Bisexual: attracted to people of your own and other genders
• Pansexual: attracted to people of any gender
• Lesbian: a woman attracted to other women
• Heterosexual (straight): attracted to people of the “opposite” gender
• Questioning: exploring your own sexual orientation

It is important to remember that a person’s sexual orientation may or may not correlate with their sexual experience; i.e, a client who has only had sexual experience with women may identify as pansexual. 

Gender identity refers to someone’s inherent understanding of their own gender and is invisible to others, meaning that we cannot just observe a person and know their gender identity. Gender expression, on the other hand, is visible: It is how a person expresses themself through clothing, body characteristics, behavior, etc. 

Gender identity exists on a spectrum and can include, but is not limited to: 

• Non-binary: having an identity that is neither completely female nor completely male
• Transgender: having an identity that does not align with the sex assigned at birth
• Cisgender: having an identity that does align with the sex assigned at birth
• Gender-fluid: having an identity that is fluid or not fixed
• Gender-expansive: an umbrella term often used for youth exploring the possibilities of their gender identity
• Intersex: an umbrella term for having variations in reproductive or sexual anatomy that do not fit binary ideas of male or female bodies

Again, the language used to describe these orientations and identities does not encompass all orientations/identities and is ever-evolving. We encourage case managers to continue to research on their own to learn more about SOGI. 

References: 

1. World Health Organization. Sexual Health [Internet]. World Health Organization. 2024 [cited 2024 Jul 31]. Available from: https://www.who.int/health-topics/sexual-health#tab=tab_1
2. Gay and Lesbian Alliance Against Defamation (GLAAD). Glossary of Terms LGBTQ. Gay and Lesbian Alliance Against Defamation (GLAAD). [cited 8/9/2024]. Available from https://glaad.org/reference/terms
3. Human Rights Campaign. Resources: Glossary of Terms. Human Rights Campaign. 5/31/2023. [cited 8/9/2024]. Available fromhttps://www.hrc.org/resources/glossary-of-terms
4. Cleveland Clinic. Understanding Gender Identity. Cleveland Clinic. 5/30/2022. [cited 8/9/2024]. Available from https://health.clevelandclinic.org/what-is-gender-identity

STI basics

Sexually transmitted infections are very common among people who are sexually active, and anyone who has sex can be exposed to STIs. STIs originate from bacteria, viruses, and parasites. These are spread from person to person through condomless or barrier-free sexual activity (vaginal, anal, and oral sex) and sometimes through skin-to-skin contact. The good news is that most STIs can be cured and/or treated, and testing for them is simple, painless, and accessible. Bacterial infections are treatable but repeatable, so encourage clients to test, treat, and repeat. 

For case managers, the most relevant STIs include:

• Human Immunodeficiency Virus (HIV) is caused by a virus that attacks the body’s immune/defense system. Without treatment, it can lead to AIDS (acquired immunodeficiency syndrome) Most people have flu-like symptoms that can appear within four weeks after infection, but some people have no symptoms; the only way to know if a person has HIV is to get tested. HIV can be transmitted through sex via semen, pre-seminal fluid, rectal or vaginal fluid, and blood. The virus can also be transmitted through blood when sharing needles, syringes, and other drug injection equipment. HIV can be transmitted from parent to child through blood and/or breast milk during pregnancy, childbirth, and/or breastfeeding, especially if a parent is not on antiretroviral therapy. HIV is not transmitted by sharing utensils, hugging, kissing, holding hands, coughing, sneezing, tears, or toilets, or through food and water. Nowadays, HIV is highly preventable by using condoms the right way every time a person has sex, by not sharing needles or drug injection equipment, and by using PrEP and/or PEP medications (see below). Also, antiretroviral therapy can suppress the virus so well that it is undetectable in a blood sample. People whose HIV stays undetectable over time on antiretroviral therapy cannot transmit HIV through sex, and are much less likely to transmit HIV from parent to child. This HIV prevention strategy is known as undetectable equals untransmittable, or U=U. 
  
  For people who are HIV negative, testing is recommended at least once in a lifetime, but more often if the person is sexually active with multiple partners (every 3 to 6 months), and/or if they use injectable drugs. 
  
  At the moment, there is no cure for HIV, and people who get HIV have it for life; nevertheless, with proper medical care, adherence to antiretroviral therapy, and viral suppression, people can live long, healthy lives, and protect their partners. 
  
  
• Chlamydia and gonorrhea are both caused by bacteria. Chlamydia and gonorrhea can be cured with antibiotics; however, they are also repeatable, meaning that people can get chlamydia and gonorrhea again—there is no lifelong immunity. Most people do not have symptoms, and the only way to know about a present infection is to test. These infections are localized to the point of entry in the body, so localized three-site testing is advised. (Key point: If you use your penis, mouth, and/or vagina for sex, test it!) Untreated chlamydia and gonorrhea can lead to pelvic inflammatory disease and make it difficult to get pregnant, and may increase a person’s chances of getting or transmitting HIV.
  
  Additionally, gonorrhea can rarely spread to other sites of the body causing a more disseminated disease.
  
  
• Syphilis, also caused by bacteria, is curable with antibiotics, and repeatable. Syphilis can be transmitted through sex and from parent to child during pregnancy and childbirth. 
  
  Syphilis has four stages with different symptoms. They range from sores called chancres on the penis, vagina, anus, rectum, lips, or mouth, to skin rashes/eruptions in one or more areas of the body. These symptoms last several weeks. 
  
  Syphilis is a complex, multi-stage, systemic infection (meaning it affects the whole body). Untreated syphilis can increase a person’s chances of getting or transmitting HIV. Over time, untreated syphilis can cause multi-organ damage and even death. 
  
  
• Hepatitis B is a vaccine-preventable infection of the liver caused by the hepatitis B virus (HBV). HBV can be transmitted in the same ways as HIV, and people with HIV are frequently also affected by acute (short-term) or chronic (long-term) viral hepatitis. 
  
  Acute HBV is a short-term illness that typically takes place within the first six months after initial exposure, with symptoms ranging from none/mild to severe illness that may require hospitalization.
  
  Chronic HBV may occur if acute HBV is left untreated, and can result in liver damage, cirrhosis (permanent liver scarring), liver cancer, and even death; liver disease is a major cause of non-AIDS-related deaths among people with HIV. Everyone living with HIV should be tested for HBV when they are initially diagnosed, and people who have continuous exposure opportunities should be tested annually.  
  
  
• Genital Herpes is caused by the herpes simplex virus type 1 and type 2 (HSV-1 and HSV-2). Herpes can be transmitted through kissing; vaginal, anal, and/or oral sex; and skin-to-skin contact, especially when sores or blisters are present. It can also be transmitted when there are no visible sores.
  
  The first herpes outbreak tends to be more painful and uncomfortable; repeated outbreaks are usually shorter and less severe. Herpes infection is not curable, but its symptoms and infectiousness are treatable. Herpes infection may cause sores or breaks in the skin or lining of the mouth, vagina, and rectum, providing an entryway for HIV; having both HIV and genital herpes increases the chances of transmitting HIV to partners during oral, vaginal, and/or anal sex. 

Changing sexual behavior to reduce exposures to STIs can be a challenge. Obstacles include low public awareness, stigma around STIs, limited resources to cover out-of-pocket expenses, inadequate training for healthcare workers, and lack of inclusive and affirming health services. Case managers can provide information, education, and counseling to support clients’ own STI prevention efforts and help them identify STI symptoms and seek treatment (and encourage their partners to do so). 

References

1. CDC. About [Internet]. HIV. 2024 [cited 2024 Aug 5]. Available from: https://www.cdc.gov/hiv/about/index.html
2. Sexually transmitted infections [Internet]. Hiv.gov. [cited 2024 Aug 5]. Available from: https://www.hiv.gov/hiv-basics/staying-in-hiv-care/other-related-health-issues/sexually-transmitted-diseases
3. CDC. About [Internet]. Syphilis. 2024 [cited 2024 Aug 5]. Available from: https://www.cdc.gov/syphilis/about/index.html
4. Hepatitis B & C [Internet]. Hiv.gov. [cited 2024 Aug 5]. Available from: https://www.hiv.gov/hiv-basics/staying-in-hiv-care/other-related-health-issues/hepatitis-b-and-c
5. Hepatitis B Basics [Internet]. CDC.GOV [cited 2024 Aug 23]. Available from: https://www.cdc.gov/hepatitis-b/about/index.html
6. CDC. About [Internet]. Genital Herpes. 2024 [cited 2024 Aug 5]. Available from: https://www.cdc.gov/herpes/about/index.html?CDC_AAref_Val=https://www.cdc.gov/std/herpes/default.htm
7. Sexually transmitted infections (STIs) [Internet]. Who.int. [cited 2024 Aug 5]. Available from: https://www.who.int/news-room/fact-sheets/detail/sexually-transmitted-infections-(stis)

• Hepatitis C is another viral infection of the liver. Hepatitis C virus (HCV) can lead to acute illness or cause chronic, potentially life-threatening disease. The virus is primarily spread through blood, such as by sharing needles or syringes, or through unsafe medical procedures, such as blood transfusions with unscreened blood products. It can also be transmitted through sexual practices that lead to exposure to blood, and from parent to child during pregnancy and childbirth. 
  
  HCV is not spread by sharing utensils, hugging, kissing, holding hands, coughing, or sneezing, or through food and water. Most people do not experience symptoms, but if they do, they may include fever, fatigue, loss of appetite, nausea, vomiting, abdominal pain, dark urine, and yellowing of the skin or eyes (jaundice). Testing for HCV is the only way to know. (Test, treat, repeat!) Everyone living with HIV should be tested for HCV when initially diagnosed, and people who have continuous exposure opportunities should be tested annually. 
  
  There is no vaccine for HCV, but it can be treated and cured with antiviral medications; however, HCV reinfection is possible after successful treatment. Early detection and treatment are crucial to preventing serious liver damage and improving long-term health outcomes. 
  
  Acute HCV infections are often asymptomatic and rarely lead to life-threatening conditions; approximately 30% of people clear the virus spontaneously within six months without treatment. About 70% develop chronic hepatitis C, and among those with chronic infection, 15% to 30% develop cirrhosis within 20 years.
  
  What is the connection between HIV and HCV? HIV and HCV can be transmitted through blood, so sharing needles or other drug equipment increases exposure opportunities for both viruses. It is recommended that every person living with HIV gets tested for HCV and vice versa.
  
  HCV can be prevented by not sharing needles, syringes, or other injection drug equipment. Other ways to reduce exposure opportunities for HCV include:
  • not sharing toothbrushes, razors, or other personal items that may come in contact with another person’s blood;
  • when getting a tattoo, ensuring the instruments used are sterile; and
  • using condoms the right way every time.

References:

1. Hepatitis C [Internet]. Who.int. [cited 2024 Aug 8]. Available from: https://www.who.int/news-room/fact-sheets/detail/hepatitis-c
2. HIV and Hepatitis C [Internet]. Nih.gov. [cited 2024 Aug 8]. Available from: https://hivinfo.nih.gov/understanding-hiv/fact-sheets/hiv-and-hepatitis-c
3. Hepatitis B & C [Internet]. Hiv.gov. [cited 2024 Aug 5]. Available from: https://www.hiv.gov/hiv-basics/staying-in-hiv-care/other-related-health-issues/hepatitis-b-and-c

Partner services (PrEP and PEP, disclosure)

Disclosure, the process of telling others your HIV status, is a very personal issue for clients. As a case manager, your duty is to inform clients of the different options that are available to them via partner services. 

Most clients choose to self-disclose. This is option number one, and clients may need assistance with how to begin the conversation, choosing the words to use in the discussion, and next steps for their partner(s) after disclosure (e.g., getting tested, getting on PEP/PrEP). 

Dual disclosure is option number two. This is a less frequently chosen option, in which a client discloses to their partner(s) accompanied by staff like a trained case manager or public health advisor. The staff person is there to offer social support to the client and share information on next steps for the partner(s). 

The third option for disclosure is called anonymous third-party disclosure. This is when the client gives the medical case manager and/or public health advisor as much information about their partner(s) as possible, including but not limited to name, address, telephone number, a general physical description, the app where they met, and the make/model of their car. This information will help to locate the partner(s) for disclosure. Disclosure is done anonymously, meaning the partner is never told any information about the reporting client. In fact, the public health advisor who performs the actual disclosure is never the person who took the information from the reporting client. 

In all of these scenarios, partners are offered information on next steps, including but not limited to testing options, access to PEP/PrEP as appropriate, and access to doxycycline post-exposure prophylaxis (Doxy-PEP). 

PEP

PEP stands for post exposure prophylaxis. PEP is a 28-day course of antiretroviral medicines used after potential exposure to HIV. PEP must be started within 72 hours of exposure—the sooner, the better. Case managers should be aware that potential recent exposure to HIV is an urgent situation and PEP may be indicated. PEP is free to the public and can be accessed through any medical provider, most county clinics, and emergency rooms. 

PrEP

PrEP stands for pre-exposure prophylaxis. PrEP uses antiretroviral medicines to prevent HIV infection before exposure to the virus. It is available in two forms: as oral pills and injections. When used as prescribed, PrEP can reduce the risk of contracting HIV via sexual contact by about 99% and reduces the risk of getting HIV by at least 74% among persons who inject drugs. 

Truvada and Descovy are the two current pill forms of PrEP. Descovy (emtricitabine/tenofovir alafenamide) works differently on rectal tissue than it does on vaginal tissue, and it is currently approved for use only by cisgender men and transgender women who have sex with men. Truvada (emtricitabine/tenofovir disoproxil fumarate) is for people of all sexes and genders at risk for HIV through sex or injection drug use. These medications are generally taken once a day, and ongoing PrEP care includes regularly scheduled visits with a clinician/provider for updated labs and HIV and STI testing. 

Apretude (cabotegravir) is the injectable form of PrEP and is taken once every two months. Apretude can be used by people of any gender. 

There is a “lead-in” period of dosing for PrEP medicines to reach protective levels for different routes of HIV exposure. For receptive anal sex (bottoming), oral PrEP reaches protective levels after about seven daily doses. For receptive vaginal sex and injection drug use, oral PrEP reaches protective levels after about 21 daily doses. There is no data available for PrEP effectiveness for insertive anal sex (topping) or insertive vaginal or front-hole sex. Apretude will reach protective levels in the body for most people within seven days after the first injection, according to the manufacturer.

Any licensed prescriber can prescribe PrEP. There are many ways to access PrEP and PrEP services, including through a client’s regular provider, sexual health clinics, local public health departments, and telehealth services. There are also many ways to pay for PrEP, such as through private medical insurance, Medi-Cal, Medicare, Veterans Administration, Tricare, Indian Health Service, and patient assistance programs. 

Doxy-PEP

Doxy-PEP is antibiotic treatment that can reduce the chance of acquiring syphilis, gonorrhea, and/or chlamydia if taken within 72 hours after exposure to these bacteria. Doxy-PEP is recommended for cisgender men, men who have sex with men, and transgender women with a history of bacterial STI diagnosis. Although Doxy-PEP is not recommended for people vaginas at this time, but individuals with vaginas who are sexually active and interested in Doxy-PEP can review fully risk and benefits with a provider as further studies are pending. Learn more on Doxy-PEP here.

References: 

1. San Francisco City Clinic. Doxy-PEP. San Francisco City Clinic. [cited 8/23/2024]. Available from Doxy-PEP | San Francisco City Clinic (sfcityclinic.org)
2. U.S. Centers for Disease Control and Prevention. Preventing STIs with Doxy-PEP. 09/19/24 [cited 11/15/24]. Available from https://www.cdc.gov/sti/prevention/doxy-pep.html. 
3. U.S. Centers for Disease Control and Prevention. HIV Pre-exposure Prophylaxis (PrEP) Care System. U.S. Centers for Disease Control and Prevention. 03/2023 [cited 8/8/2024]. Available from https://www.cdc.gov/hiv/effective-interventions/prevent/prep/index.html
4. U.S. Centers for Disease Control and Prevention. Clinical Guidance for PrEP [Internet]. U.S. Centers for Disease Control and Prevention. 05.2024 [cited 8/8/2024]. Available from https://www.cdc.gov/hivnexus/hcp/prep/index.html
5. U.S. Centers for Disease Control and Prevention. Preventing HIV with PrEP [Internet]. U.S. Centers for Disease Control and Prevention. 01/2024 [cited 8/8/2024]. Available from https://www.cdc.gov/hiv/prevention/prep.html 

Takeaways & tips for case managers

1. Discussing sexual health history and offering partner services to clients is part of a case manager’s job.
2. Be aware of your own limitations and biases. Ask for assistance from others to help you learn and grow. 
3. Be client centered, offer assistance and information, and meet the client where they are at.
4. You do not have to be the expert on everything, just know who and where you can refer clients! 
5. Empower your clients: Give them the information and support them to take part in their care. 
6. Practice self-care: You need to be physically, emotionally, and spiritually fit to best serve your clients. 
7. Learn about and use evidence-based interventions and best practices (harm reduction, trauma-informed care, adverse childhood experiences, etc.).

Section 8: Making Strong Referrals and Warm Handoffs in Your Case Manager Community

Author: Georgia Schreiber

Introduction

As a case manager, helping clients locate and connect to a variety of services may be part of your job, because clients may have priorities other than seeking HIV care. To boost the success of your client in one area, it may be necessary to help them in others. 

Clients may have many reasons for not engaging in HIV care. For example, they may be asymptomatic and feel healthy. They may not have access to transportation. They may have more pressing concerns, like living in a tent and fearing their belongings will be stolen if they leave for an appointment. If your client has challenges or priorities other than engaging in HIV care and taking HIV medication, you may have success connecting them with care only after you help them address their housing, food, legal, and other health issues. In the process of addressing some of these barriers to care, you may build critical trust between yourself and your client that will eventually facilitate HIV linkage.

To address barriers to care, start by assessing the components of the client’s life, including family, people they rely on and people who rely on them, their occupation and housing status, and any issues with basic functioning such as mental health, substance use, stigma, source of income, or legal challenges. This process will help to construct a basic list of the client’s individual strengths and challenges before identifying resources and linking to services.

In most communities, accessing various social services and navigating government bureaucracies is challenging for anybody. For people who are overwhelmed with multiple problem areas and who may not have the knowledge and time to prioritize and advocate for themselves, you can be a crucial ally by working through the local system on their behalf. 

Every client is different, but you can develop a list of common needs that many clients have presented with. To save time and be more effective in helping clients, you can develop your own list of types of services, with names of organizations that provide them, ideally with contact information and the process for getting services. (In this manual, see the Referral List in the appendices section.) If time and experience permit, you can also make professional connections with specific people at as many of these partner organizations as possible. This way, when you are helping a client deal with an issue outside of your own specialty, you can introduce them to your contacts and create a “warm handoff” referral.

This section below highlights the keys to making successful referrals. 

What makes a strong referral?

A strong referral is one that addresses the specific needs of each client. For example, if you know your client would benefit from a lot of hands-on help, an ideal referral would be to a provider’s office with case managers who can give personal attention and assistance.

A strong referral would include the following elements: 

• The organization addresses the client’s area of need, e.g., housing or food.
• The site has features that make the client feel comfortable and more likely to follow through with tasks and appointments there, e.g., it is physically accessible, provides services and materials in your client’s preferred language, and offers the level of personal attention your client requires.
• The organization has the capacity to serve your client’s needs.
• The organization has responsive staff who can show ongoing dedication to the client after the referral has been made.

Networking with other service providers

The deeper a network you can develop among local organizations where you regularly refer clients, the better quality your referrals will be. You can get better service yourself with a friendly colleague, and together you serve the client better. Also, with a friendly colleague, you may get updates about the organization and any opportunities or barriers your client may face when dealing with it. You can build provider networks through introductions from colleagues, through cold calling and introducing yourself and your services, or by arranging a meeting with staff who would take a referral from you, such as a case manager. 

Developing a contact list and keeping it up to date

Once you build a list of organizations, update it regularly to keep up with staffing and organizational changes. 

Staying in contact with clients throughout the referral process

Before you give a client a phone number, an address, or even the name of an organization where you want to refer them, make sure the place is still in operation and that they have the capacity to take your client’s case.

Some clients can take the name of an organization and a phone number or address, and will outreach to that place themselves. Some clients prefer this approach. If you are confident the client will follow through with their own referral, just make sure the referral information is up to date before sharing it with them.

Other clients may need your help calling to make the first contact, setting up the appointment, or accompanying them to at least one appointment. Depending on your capacity, providing an individualized level of intervention and hands-on assistance will make a difference in the success of the referral and your client’s outcomes.

Beginning, middle, and end of the referral process

• Identify specific, detailed needs of your client.
• Talk with your client and assess their readiness and willingness to take a referral. Get their input and buy-in to receive a referral to an organization you have in mind.
• Make contact with the organization and make sure they have the capacity to take your client’s case.
• If possible, identify a person at the organization who will agree to work with you and your client and will warmly receive your client at the outset.
• Talk with your client about what they can expect from the organization, why they are going there, who they will be dealing with, and what paperwork they will need for their first contact with the organization.
• Help the client set up the initial appointment and gather paperwork, if necessary.
• Make sure the client has a plan for how and when they will get to the appointment.
• If needed, partner with the client through transportation and first appointment.
• Suggest that your client let you know how the appointment went or whether anything prevented the appointment from happening.
• Plan a time to check in with your client and the receiving organization after the first appointment, to make sure the connection happened and learn what next steps are needed, so you can help your client stay linked to the organization and succeed with their goals there.

Maintaining contact with other provider in the referral process and seeking feedback

If you already have a professional and or friendly rapport with a contact at the receiving organization, the follow-up process will be easier. When you first alert the contact about the referral, you can let them know you will be in touch to find out how the appointment went and find out the contact’s recommendations for the client or what next steps are needed. Getting to know specific professional contacts can help you with your client referrals, and you may also become a trusted resource to the other organization.

Takeaways and tips in the referral process

Tips for success for making good referrals for your clients:

• Research local organizations that are successful at helping clients with needs that generally match your clients’ needs, including cultural competence, language and physical accessibility, transportation, hours and days of operation, and the organization’s capacity to take on new clients.
• Make personal connections at organizations where you frequently want to send referrals.
• Get your client’s buy-in before you give them a referral. Give them encouragement and share your impression of the organization, and tell them what they can expect when they make contact there.
• Make a “warm handoff” by introducing your client to a contact at the receiving organization.
• Follow up with the client and the other organization after the scheduled first contact, to find out if the referral was successful and learn next steps for the client’s success. 

Section 9: Self-Care & Preventing Burnout

Author: Damon Powell

As a case manager, you are constantly being pulled in a thousand different directions at once. You try to be present and available both emotionally and physically for your clients. Many of us know all too well the feelings of exhaustion and burnout that can result from constantly pouring so much of yourself into others. Many of us have accepted these periods of burnout as a natural part of the terrain. 

But it doesn’t have to be that way. Devoting time and space for self-care is essential. Running yourself into the ground until you are either physically drained to the point of sickness or suffering mental breakdowns is neither sustainable nor necessary. As you pour into others, you must also find ways to release the daily stressors and replenish yourself physically and psychologically. No one can pour from an empty cup!

Self-care is a win-win for everyone. You are better able to maintain your well-being and momentum, your agency and community benefit from you maintaining a calm and consistent presence, and the clients in your care get your best consistently.

In the sections below, we will present various ideas, strategies, and practices you can use to take care of yourself.

Self-Care:

Is It Ethical?

Research now indicates that self-care is more important than ever for case managers and those who provide direct services to clients. The current evolution of work culture to a more hybrid model has made it even more difficult and essential for case managers to practice self-care routinely. When you regularly split work time between the office and home, leaving the stresses of the day behind once you clock out can be extraordinarily difficult. 

This new way of working makes setting boundaries between the personal and professional an essential part of maintaining a healthy and safe environment for you and your clients. Studies have shown that many hybrid workers end up working longer hours at nontraditional times when working from home. With higher caseloads and longer, nonstandard hours, self-care is essential. The anguish of caring for and supporting others along with often helping to bear their burdens can quickly lead to apathy, compassion fatigue, and rapid burnout. 

Taking time to find and maintain work–life balance under these circumstances is an ethical imperative that will benefit both you and those you serve. You owe it to yourself and your clients to set firm boundaries and take the time out you need for renewing yourself physically and psychologically. 

Know Your Limits:

Establishing Healthy Boundaries

Healthy boundaries are paramount in our efforts to prevent burnout. Now that more case managers are working within a hybrid framework, establishing and maintaining clear boundaries between the professional and the personal is paramount. If you are consistently experiencing intrusive thoughts about professional tasks, projects, or clients outside of work hours, you may be on the road toward burnout. 

Boundaries are the guidelines and limits we set in order to let others know what we are comfortable with (professionally or personally). These limits and guidelines must include specific actions and behaviors that clearly define what we consider to be intrusions into our personal or professional lives. In order to set these boundaries, we must do some inner work to get clear on what we need to protect our mental and physical well-being. 

Once we have taken the time to reflect on these needs, we are responsible for communicating these guidelines in a clear, firm, non-threatening manner to those around us—be it friends, colleagues, supervisors, or clients. This may look like being clear with clients about when it is acceptable to reach out or when they can expect to hear from you, letting colleagues and supervisors know that you do not expect to field questions or review materials while on lunch, or any other limits you feel are necessary to protect your physical and mental energy. For case managers this is a necessary first step toward separating our personal and professional lives in a healthy and sustainable manner. Clear boundaries set the foundation for avoiding burnout and increasing your professional longevity!

Making it Work:

Practical Tips for the Home and Office

Now that you understand the need for self-care, as well as how to recognize burnout and clearly articulate your boundaries, it’s time we shared some practical tips on how to engage in routine self-care and avoid burnout. 

It takes a friend to be a friend

As case managers, seeking and offering support from supervisors and colleagues is a must. This means you should actively pursue opportunities to participate in peer support groups, mentorship opportunities, employee assistance programs, and other support networks where you can speak openly and honestly about your tragedies and victories as a case manager. These networks are your first line of defense against feelings of isolation and a place to obtain advice, share strategies, and give and receive emotional support. You can include friends and family members in this network if you are able to do so without violating any rules around confidentiality. 

Another benefit of networks is the opportunity to sharpen and hone your skills through continual learning. Networks are the perfect environment for ongoing professional development in a field that is constantly evolving and transforming. Many networks also offer opportunities to participate in ongoing education, training, developing the latest best practices, and mentorship experiences that will build confidence and competence while you add new skills to your resume. 

Fostering a Healthy, Supportive Environment 

Spending half your time working from home does not negate the need for a healthy working environment. Don’t be afraid to advocate for yourself and others regarding workplace policies and procedures that don’t promote wellbeing or redundancy. Speak to your supervisor and others in the chain of command about the need to update organizational protocols or workplace systems that could be more efficient for case managers or clients. This may include the need to discuss or adjust unrealistic caseloads, cutting out non-essential meetings, or establishing regular times and days for updating case notes in order to prevent burnout and ensure that quality care is being delivered to each client.

Sometimes, creating a healthy and supportive work environment will mean integrating new or better technology. Upgrading systems or installing new technological tools can often increase efficiency and productivity in ways that relieve stress. This is particularly true for technology that reduces paperwork, cuts down on administrative tasks, or prevents constant emails and notifications that can keep you stuck at your desk. 

The Personal Supports the Professional

Just as the stresses of work can leak into your personal life, things from the personal sphere can have serious effects on your professional performance. Studies indicate that consistently applying self-care in your personal life can help you develop high levels of resilience, which in turn helps with challenges in every area of life.

The list below is not exhaustive and should serve as a starting point from which to build a solid foundation of practices that you can integrate into your lifestyle and use as needed. The more tools we have in our toolbox, the better equipped we are to handle situations that arise in our personal or professional lives. 

Some of these self-care strategies could be:

• Getting physical – Regular physical activity is essential for stress relief and mental and physical health. This could include taking a walk at lunch or going to the gym a few days a week after work. Anything that gets you moving is important.
• A healthy diet – Proper nutrition is important to your overall health, physically and mentally. Sugary and/or highly processed foods can affect mood, not just physical health. Eating regularly helps to maintain consistent blood sugar levels through the day so you can avoid becoming “hangry” or irritable. This also means making sure that you stay hydrated by keeping a container of water near you most of the day.
• Sleeping it off – Getting good, consistent sleep each night is integral to your overall wellbeing. Make sure you establish a regular sleep schedule and actively address any barriers that are preventing you from sleeping for 7–9 hours each night.
• Having some fun – Make sure you plan time for any hobbies and interests you have. Don’t cancel or delay your vacations because of high workloads. Actively pursue time with friends and family to avoid isolation. Make a joke or two with colleagues at the office. Make time for the people and things that light your inner fire. 
• Going higher – Regularly engage in practices like mindfulness meditation, tai chi, yoga, deep breathing, worship, connecting to nature, or other activities that promote inner peace and contemplation. It is important to feel connected to something greater than ourselves, whether it be the universe, collective consciousness, God, your inner being, etc. The label isn’t what’s important; it’s all about the connection.

The key to developing resilience lies in commitment and consistency. Self-care can never be a “one and done” set of practices we check-off from our to-do list. We must identify practices that work for us and commit to engaging in them consistently. This way, over time they become integrated into our worldview, so that they become automatic habits or ways of being that support the varied ways each of us navigates through life. 

Self-Care is Self-Compassion

Practical self-care tips

Commitment and consistency must be accompanied by self-compassion. The concepts and strategies above will only work if you commit to using them consistently on a long-term basis. This is the most efficient path to developing deep-rooted resilience. It is this resilience that will allow you to maintain balance, avoid burnout, and provide compassionate care to those you serve.

None of the above is possible if you are not willing to extend the same grace and compassion to yourself that you regularly offer to your clients. The more you work at soothing and caring for yourself, the better equipped you are to offer those same gifts to others. Self-care isn’t selfish or self-indulgent. The only way we can truly care for others is if we have first taken the time to learn how to deeply care for and accept ourselves. None of us is perfect, so we must cultivate the habit of being gentle with ourselves.

Celebrate the wins, manage your time and energy, be grateful, and look for the positive in yourself and others. You are the only person that you ever truly live with—so make the relationship a great one!

Important links/resources

• Push Pause Videos
  This video series offers helpful ideas and tips on a variety of topics related to case management and self-care.
• Self-soothing Techniques to Calm the Body & Mind
  List of 10 proven techniques for calming the body, soothing the mind, and creating lasting peace.
• Self-Care Practices For Mind, Body, and Soul
  List of 45 quick easily accessible techniques for mind, body, and soul.
• Compassion Fatigue Assessment Tool
  A helpful self-administered test that will help you recognize if you are dealing with compassion fatigue.

References: 

• Self-Care Tips for Case Managers 
• Avoiding Burnout for Case Managers; 5 Things You Can Do
• The Ethical case for case Manager Self-Care
• What are the Best Practices for Self-Care and Burnout Prevention in Case Management and Client Services
• Do Case Mangers have a Good Work-Life Balance?
• 10 Simple ways to Practice Self-Care
• Did You Know Burnout is Real?
• Preventing Burnout in Care Managers
• 10 Tips on Self-Care for Social Workers

Section 10: Professional Growth and Opportunities for Case Managers

Author: Georgia Schreiber

As a case manager, skill building comes from on-the-job experience with clients and colleagues, and if you are lucky, your job will provide access to formal trainings, case conferencing among coworkers, and one-on-one supervision. In some jobs, however, there may not be colleagues on site with similar enough training to provide informal or formal advice on your work. In some cases, your manager may not have the experience to give you helpful guidance, either. This section will discuss different types of professional growth and opportunities for case managers that you can seek out even if they are not offered to you where you work.

Case conferencing

Case conferencing means getting together with colleagues who provide similar or adjacent services, where everyone can present examples of current cases and get advice and different perspectives from the group. 

Case conferencing has multiple benefits for the case manager, including learning from coworkers, experiencing interdisciplinary perspectives, building useful relationships with colleagues, learning best practices, and upholding standards of care for clients. 

Best practices

If case conferencing is available at your organization, it could include colleagues with cases of their own, any supervisors or coworkers with the same or more experience, and sometimes authorities in the kinds of challenges facing your clients. 

• Meet regularly. This could be daily, weekly, semiweekly, monthly, or quarterly. Meeting regularly gives case managers a sense of support and the ability to plan for their case presentations.
• Have a standard presentation format and time frame for the case presentations. 
• Give every member of the group regular and equal opportunities to present cases.
• Establish ground rules for constructive communication and advice giving among the group members.
• Include group members from a variety of relevant disciplines, whenever possible. 

Preparing and presenting a case

Before you present a case to your colleagues, prepare an outline with certain details to present to the group and make sure your presentation will be concise and fit the time limit. The group can agree on a standard format for case presentation, usually including the following elements: 

• Basic demographic information about client
• History of how the client came to the organization and description of general rapport between client and case manager
• Problem history
• What techniques, tasks, and referrals case manager has already employed in this case
• Successes and challenges of case manager working with this client so far
• Specific strengths and challenges of client toward reaching their goal
• Specific problem or point in progress case manager wants help from the group to solve

Clinical Supervision

The purpose of clinical supervision is to meet with a supervisor who has more training and experience in your field and can advise and encourage you on challenges with particular cases. A clinical supervision meeting presents an opportunity for the clinical supervisor to know what your caseload and work style are like. 

Ideally, the clinical supervisor would have a higher level of responsibility than the case manager, could offer support to the case manager generally, and would bear some of the responsibility if bad outcomes occur with a case.

How to get the most out of clinical supervision

It is helpful to develop a positive rapport with your clinical supervisor and set a regular meeting time for clinical supervision. Anytime you have a clinical supervision meeting, even if it is not regularly scheduled or is only regarding one case, be prepared to present to your clinical supervisor the same case history details and specific questions that you would share at a case presentation in a group. 

If your clinical supervisor has any quirks, anticipating them in your delivery of information may help get the most out of one-on-one meetings.

Accessing technical assistance

If you need expert or experienced technical assistance beyond a formal case conference or meeting with a clinical supervisor, you may be able to ask a colleague with specific experience for informal advice. 

Keep HIPAA and client privacy in mind: If you reach out to a colleague outside your group, be sure to change or omit details that would identify your client. If you are speaking with a friendly colleague, it can be tempting to relax this standard, but do not. Protect client confidentiality first and foremost. 

If you realize you want more training on certain issues or common client problems, research available trainings and ask for your organization’s support to attend. If there is no budget for outside or extra trainings, there still may be ways to get the experience. Find another organization that will let you shadow their staff, or find someone who will speak to you informally about their expertise.  

Takeaways and Tips for Case Managers

• Consult and adopt standard guidelines for case presentations in your organization.
• Cultivate and practice advanced communication techniques for working with coworkers and managers to help make case conferencing and clinical supervision meetings productive.
• Ask for and seek out more training in areas you feel especially interested in or where you want to gain more experience.
  

References

• Article, “Case Presentations and the ASWB Exam (Including Templates!)”, Agents of Change, April 26, 2023 at agentsofchangeprep.com 

Section 11: Caring for Specific Populations

Sub-sections:

• Caring for clients who are homeless/unhoused
• Caring for LGBTQ clients
• Caring for Latinx clients who are undocumented
• Caring for clients who are facing mental health challenges
• Caring for clients who use substances
• Caring for clients impacted by trauma
• Caring for clients who are aging with HIV
• Caring for clients with language needs
• Caring for clients impacted by incarceration
• Caring for transitional aged youth

Caring for clients who are homeless/unhoused

Authors/Content Coordinator: Lisa Ryan

The unhoused community is frequently viewed with shame and disdain. They face judgment, mistreatment, and a lack of empathy, both at the neighborhood level and within broader systemic structures. Their needs are complex and often go unmet. 

Keep in mind that homelessness is not a one-size-fits-all experience. We must meet each person where they are in their experience. Each person’s situation is distinctive, including their reasons for homelessness, their personal trauma, and their immediate needs.

The safety of the person has to be the priority. This includes meeting their immediate needs first and foremost, such as shelter, food, and access to hygiene facilities, as well as creating a plan for sustained stability.

Many people experiencing homelessness have faced significant trauma. Approach and interactions should be grounded in understanding, compassion, acknowledging their experiences, and avoiding retraumatization.

Help clients navigate and access various resources, such as social services, healthcare, legal aid, and employment assistance. This might involve navigating and linking them with community organizations, shelters, and other support services. Be their advocate. 

Address both mental and physical health needs, including any co-occurring disorders. People who are unhoused often face chronic health issues and may have limited access to medical care. Providing access to health services is crucial.

Treat clients with respect and dignity. Avoid judgmental and biased attitudes, and work to empower them by involving them in decisions about their own lives.

Assist with issues related to identification, legal documentation, and financial support. Many unhoused individuals face barriers in accessing social services due to lack of ID or other documentation.

Establishing trust is vital when serving the unhoused community. Betrayal has been consistent in many of their experiences. Do not make a promise that you can’t keep. Consistent, reliable, and empathetic interactions are key to building trust, and this makes clients more receptive to help.

Work collaboratively with other service providers and agencies to ensure a coordinated approach. This can enhance the range of services and support available to the client. No one agency can meet all of the client’s needs. Work together as a coalition with other provider sites.

Be informed and sensitive to the cultural, racial, and social backgrounds of clients. Specifically, when serving the African American community, remember their experiences with the healthcare system are unique to them and should be respected and never dismissed. Cultural awareness and humility can improve communication and the effectiveness of support.

While addressing immediate needs is crucial, also work towards longer-term solutions like permanent housing, job training, and other forms of support that can help clients achieve stability and self-sufficiency.

Always advocate for systemic changes that address the root causes of homelessness, such as racism, mental health, affordable housing, non-biased healthcare access, and social safety nets. As an advocate, call out the biased behavior of service providers. Let’s hold each other accountable.

Tips/takeaways: 

1. Approach the work with the unhoused community as you would any other community: with respect, patience, compassion, and empathy, not sympathy. 
2. Be consistent and deliberate in your interactions with clients, to help build trust.
3. Meet the clients where they are.
4. Wear sensible attire (rather than a business suit, for example) to avoid inadvertently emphasizing the uneven case manager–client power dynamic and diminishing their sense of self worth.
5. Be solution oriented and service driven.
6. Allow the client to map their own care plan.
7. Always use the harm reduction approach when serving the unhoused community.

Resources: 

• Alameda County Homeless Services – Offers a variety of services and resources for those experiencing homelessness.
• East Bay Community Law Center – Provides legal assistance and advocacy for low-income and unhoused individuals in the East Bay.
• Bay Area Community Services (BACS) – Offers housing and supportive services for unhoused individuals and those at risk of homelessness.
• Operation Dignity – Provides transitional housing and support services to unhoused individuals and families.
• Homeless Outreach Program (HOP) of Alameda County – Offers outreach services and resources to people experiencing homelessness.
• Eden I&R – Provides information and referrals for a variety of services, including emergency shelters and food resources.

Caring for LGBTQ clients

Author: Maurice Tobin

The LGBTQ community requires special consideration due to unique health disparities, discrimination, and social stigmas that can affect their access to and quality of care. Understanding and addressing these specific needs is essential for providing effective and compassionate case management.

Case managers should keep in mind several key factors when providing inclusive services and care for the LGBTQ community. Many individuals in this community face significant challenges, including discrimination, isolation, housing and food insecurities, and struggles with substance use. Some may also experience mental and/or physical abuse and trauma. That’s why it’s essential to be aware of the services available to support them and ensure they are approached in a gender-neutral and affirming way. 

Gender-affirming care is crucial to making clients feel understood and respected. It’s important to understand how someone identifies, as men who have sex with men (MSM) and trans-identifying individuals are among those most disproportionately affected by HIV. By providing compassionate, inclusive care, case managers can play a critical role in helping to reduce these disparities and create a safer, more supportive environment for LGBTQ clients.

When working with the LGBTQ community, it’s so important for case managers to approach things with cultural understanding. Take the time to really know your target population and the resources available to them—it makes all the difference. Take the time to explore and address any personal biases or judgments. The last thing you want is for someone to feel like they can’t open up to you or share what they’re going through because they’re afraid of being judged. 

Everyone’s journey is different, and it’s important to recognize that. It can also be incredibly helpful to have people in case manager roles who either identify with or truly understand the experiences of the LGBTQ community. By being compassionate and open, you can help create a space where clients feel safe, understood, and supported.

Examples/practical applications

1. Cultural competency and training: Staff and volunteers should undergo regular training on LGBTQ issues, including the use of correct pronouns, understanding gender identity, and recognizing the specific health and social needs of LGBTQ clients.

Example: Implementing a mandatory cultural competency training program for all case managers, with modules on LGBTQ-specific issues, updated regularly to reflect current best practices.

2. Creating safe spaces: Establishing safe, inclusive environments where LGBTQ individuals feel respected and supported. This includes ensuring clinics, shelters, and other service centers have clear anti-discrimination policies.

Example: Partnering with local LGBTQ organizations to designate specific shelters as LGBTQ-friendly and ensuring these shelters have staff trained in LGBTQ cultural competency.

3. Gender-affirming care: Providing access to healthcare services that affirm the gender identity of the client. This includes hormone therapy, mental health support, and other gender-affirming treatments.

Example: Collaborating with healthcare providers to create a referral network for gender-affirming care and ensuring clients are aware of these resources.

4. Comprehensive sexual health services: Offering comprehensive sexual health services, including PrEP and PEP for HIV prevention, STI testing and treatment, and sexual health education.

Example: Hosting regular sexual health clinics in collaboration with local health departments and LGBTQ health organizations.

5. Addressing mental health needs: Providing access to mental health services that are sensitive to the unique experiences of LGBTQ individuals, including trauma-informed care.

Example: Establishing partnerships with mental health professionals who specialize in LGBTQ issues and offering on-site counseling services at your site.

Key Takeaways

• Pronouns matter: Always use the client’s pronouns and preferred names. This simple act of respect can significantly impact their comfort and trust in the service provider.
• Cultural competency: Ongoing education and training on LGBTQ issues are essential for providing empathetic and effective care.
• Gender-affirming approach: Ensure that all healthcare and support services affirm the client’s gender identity.
• Bias awareness: Be aware of and actively work to mitigate personal biases. Approach every client with an open, non-judgmental mindset.
• Holistic care: Address the comprehensive needs of LGBTQ clients, including mental health, sexual health, and social support.

Important Links/Resources

• GLAAD Media Reference Guide: GLAAD Guide
• The Trevor Project
• Human Rights Campaign (HRC): HRC Resources
• National LGBT Health Education Center: LGBT Health Education
• Trans Lifeline
• National Center for Transgender Equality

Acknowledgements

I would like to extend my heartfelt thanks to the following individuals and groups for their invaluable assistance with information: The staff at the Oakland LGBTQ Center, Quinn Fowler, Benjamin Jackson, Angel Arellano, Dante Washington, Sam Carmel, Andy Cabrera, and Anita Thomas. 

Caring for Latinx clients who are undocumented

Author: Carmen Foster

Latinx communities in the United States are experiencing a troubling increase in HIV infections, compounded by significant barriers to healthcare access, such as limited social support, immigration status, poverty, language challenges, exploitation, and difficulties in acculturating to U.S. culture. Discrimination based on race, income, and immigration status further exacerbates their vulnerabilities, hindering access to essential healthcare services. 

When working with Latinx individuals who are also undocumented, consider the following:

1. Available resources: Thoroughly understand and be well informed about the resources available to the Latinx population, particularly those who are undocumented. Investing time in researching and locating resources that address the specific needs of this community is crucial. Key resources to prioritize include legal services for low-income families, assistance with obtaining identification, insurance navigation, and income support.
2. Cultural and linguistic responsiveness: Meet individuals where they are, especially in terms of language. Language barriers can significantly hinder communication and access to essential services. To address this, it is crucial to intensify the effort to hire individuals from within the community you are serving. This means recruiting staff who not only speak Spanish but are also well-versed in the cultural nuances of the community. This approach should apply not only to case managers but also to medical staff. It is important to identify those within your agency who are best suited to work effectively with this population.
3. Provision of educational materials: Offer educational materials in Spanish that are specifically related to HIV care, including topics about adherence, undetectable viral load, and other aspects of HIV management. Ensuring that this information is available in Spanish is essential for overcoming language barriers and providing Latinx individuals with the knowledge they need. Developing or sourcing these materials is a key step in effectively serving this community, enabling them not only to be informed but also to stay informed about their care. 
4. Recognizing cultural diversity: There is no one-size-fits-all approach when working with Latinx or Hispanic individuals in the U.S. These groups include persons from various countries and nations such as Cuba, Mexico, Puerto Rico, South and Central America, and other Spanish-speaking regions. Recognizing this diversity is essential in tailoring your approach to each person who seeks your services. Latinx are not a monolithic group; there are distinct differences and variations in lifestyles, health beliefs, and health practices. Emphasizing and respecting these cultural differences is crucial in providing effective and culturally responsive care. 
5. Income limitations: The Latinx population continues to be disproportionately affected by poverty. The lack of legal immigration status for many in the Latinx community often places them in very low-income brackets, which significantly increases barriers to healthcare access. Limited income influences the distance they live from accessible clinics and restricts transportation options, as many cannot afford a vehicle or must rely on inadequate public transportation. Moreover, their financial constraints make it difficult to attend medical appointments regularly without jeopardizing their employment, which is essential for their financial survival.

Examples/practical applications

It is crucial to assess your site’s existing processes and systems and determine how to tailor them to better serve undocumented Latinx clients. A holistic approach should be employed, considering the individual in their entirety. This often involves providing multiple services at a single location or bringing services directly to the client, rather than requiring them to visit different service locations, even within the same organization. Such an approach can significantly improve client outcomes. The key to success lies in effectively integrating all identified services and necessary adaptations to meet the unique needs of this population. 

References:

• 15-facts-about-Latino-Well-Being-R11.pdf (ucla.edu)
• Systematic Review of Social Determinants of Health Associated With HIV Testing Among Hispanic/Latino Gay, Bisexual, and Other Men Who Have Sex With Men in the United States – PubMed (nih.gov)
• Cultural Insights: Communicating with Hispanics/Latinos (cdc.gov)
• Barriers to Antiretroviral Therapy Adherence Among HIV-Positive Hispanic and Latino Men Who Have Sex with Men —United States, 2015–2019 | MMWR (cdc.gov)
• The Invisible US Hispanic/Latino HIV Crisis: Addressing Gaps in the National Response – PMC (nih.gov)

Caring for clients who are facing mental health challenges

Author: Monica Rowden

Clients managing mental health concerns present some specific challenges that are important to understand in order to succeed in supporting them. Close to 40% of people with depression do not seek treatment, making it extremely important to recognize symptoms and how they manifest in daily life. Thus, it is essential for case managers to have a working knowledge of how mental health symptoms present and the resources available to address them.

When collaborating with clients experiencing mental health challenges, it is important to view them through the framework of cultural humility. This allows the case manager to approach them as a whole person while recognizing the impact of structural stressors via racism, sexism, and homophobia, to name a few. 

Some examples of how structural issues can impact clients include access to services, difficulty with following through on tasks, and behavioral challenges stemming from trauma. One commonly seen behavior related to many different mental health diagnoses is avoidance. This can look like not following through on tasks, missing important appointments, or losing documents. When we can connect these behaviors to mental health symptoms or neurodiversity, we can better support our clients’ successes by developing interventions that foster effective behavioral adaptation. 

Empathy

Understanding our clients through a lens of cultural humility allows the case manager to focus on supporting behavior change and creates space for increased empathy. Empathy is another essential tool for the case manager to effectively engage the client and overcome stigma. Using empathy to strengthen the case manager/client relationship often leads to better health outcomes. Through open-ended questions, reflective statements, and genuine curiosity for our clients, we can foster strong connections that create trust. 

Shared Decision Making

As our systems of care have grown to recognize the prevalence of mental health conditions in the community, evidence-based practices have emerged to provide a framework for how to work with this population. One such practice is shared decision making. This calls for service providers to work in conjunction with clients to understand their goals and work together to meet those goals. According to the Substance Abuse and Mental Health Services Administration (SAMHSA), this process includes actively engaging the client, assessing their values and preferences, supporting them in identifying and comparing treatment options, reaching a decision together, and finally evaluating this decision. Through this process, case workers can effectively promote autonomy in clients managing mental health issues. 

Case Management

Case managers play a unique role in serving as a coordinator between multiple providers and the client. They can assist patients in normalizing the impact of symptoms on daily functioning while advocating with other providers to ensure they get the care they need. 

One useful framework is acknowledging that behavior is a form of communication. This allows space for the case manager to step back and consider the larger picture of what is impacting the client, to help understand their actions in a compassionate way. Similarly, that step back gives the case manager an opportunity to figure out what resources are needed to support the client’s needs. Given the limited resources available to our clients, this essential role of case manager as the link between client and treatment is of great value. 

Stigma/Stereotyping

One way that stigma significantly impacts the treatment of clients experiencing mental health symptoms is the stereotype of these clients being aggressive or violent. The reality is that individuals with mental health concerns are much more likely to be victims of violence than perpetrators. 

Clients with mental health concerns can have difficulty managing their emotional reactions and impulse control, which can lead to them feeling upset somewhat easily. It is essential that case managers are provided with an empathetic framework for the experiences that may be contributing to a client’s expressions of frustration, and the skills necessary to help de-escalate the client in the moment. Equally important is the need for case managers to be supported by their agencies with clear protocols of what to do when these situations arise. Considerations regarding mandated reporting can come into play, especially if the client is expressing suicidal or homicidal ideation. Through individual and group supervision, case managers can develop the skills and confidence necessary to support clients who are struggling with mental health concerns. 

Trauma Informed Care

Another important aspect of supporting clients dealing with mental health concerns is integrating trauma-informed care (TIC) into both clinical practices and institutional practice. Trauma-informed care acknowledges the impact of trauma on the lives of individuals and moves towards understanding the story behind the behavior they exhibit. TIC not only creates space for the health and well-being of the client, but also acknowledges the importance of supporting the health and well-being of case managers. A robust TIC intervention includes the following:

• Ensuring the physical and psychological safety of clients and staff
• Transparency in decision making
• Ensuring there is peer support
• Effort to reduce power differentials between clients and staff
• Empowerment to ensure all voices are heard and maintaining a focus on cultural humility

There are a variety of tools and strategies case managers can employ when working with clients who have mental health concerns. Using empathy, recognizing the impact of stigma, practicing trauma-informed care, and focusing on behaviors are some of the tools that lead to impactful relationships and ultimately access to care.

Examples/practical applications

• Meet the patient where they are at. They may or may not be ready to directly address their mental health needs. Understanding what their priorities are, building that strong relationship, and consistently supporting them opens the door to getting them connected to care when the time is right.
• Address institutional and internalized stigma with the client.
• Recognize the impact of mental health symptoms on behaviors.
• Understand behaviors as a form of communication.
• Implement trauma-informed systems to support clients and staff.
• Use open-ended questions and reflections to elicit from clients their priorities and values.

Important links/resources

• Major Depression – National Institute of Mental Health (NIMH) (nih.gov)

References: 

• 6 Tips for Working with Patients with Psychiatric Disorders | Incredible Health
• What is Trauma-Informed Care? – Trauma-Informed Care Implementation Resource Center (chcs.org)
• COMPREHENSIVE CASE MANAGEMENT FOR SUBSTANCE USE DISORDER TREATMENT (samhsa.gov)
• The Role of Empathy in Health and Social Care Professionals – PMC (nih.gov)

Caring for clients who use substances

Author: Braunz Courtney

The War on Drugs resulted in an immense growth in court caseloads and the prison population. It focused on small-time drug dealers, who were generally poor young Black males from the inner city. Ultimately, the prison population doubled due to the arrest of drug dealers and their customers. 

More nonviolent drug offenders were incarcerated, but the policies failed to decrease the rates of drug use across the United States. Criminalisation of drug users, excessive levels of imprisonment, and punitive sentencing practices—including mandatory sentencing, the death penalty, and enforced drug detention centers—are some of the unintended negative consequences of this 50-year policy, with direct impact on the vulnerable, poor, and socially excluded groups, including ethnic minorities and women. As case managers, we can play a role in addressing some of the harm caused by the War on Drugs. 

The first step in supporting our clients who use substances is acknowledging their expertise in their own lived experience as people who use drugs (PWUDs). With this approach, grounded in cultural humility, we can begin to assess and understand our clients’ goals, preferences, and needs around their substance use and HIV. Information to gather from clients includes:

• Substance use history, to identify the client’s reason and/or rationale for drug use and understand what initially led to their drug use
• Perceived severity of their past and present drug use 
• Perceived benefits of drug use, including perceived benefits to their the mind, body, and soul
• Their goals around drug use, to assist you in helping navigate them to get there
• Challenges they have experienced as a result of their substance use 
• Lessons they have learned over the history of their substance use, and how that may be applied in future decision making for continued use or for their individualized recovery plan
• Their own definition of recovery and what that would mean for them
• How their substance use alters, hinders, or helps with other social determinants of health, e.g., housing, employment, mental health, physical health, and social interactions with loved ones, friends, or acquaintances 
• How their use of drugs negatively or positively impacts those closest to them and the environment they are a part of 

Working with and/or employing PWUDs

At your agency, you may have both clients and coworkers who have experience using drugs. Employing drug users demonstrates a program’s commitment to improving the health and human rights of people who use drugs. 

In addition, employees who use drugs can become excellent role models for other drug users in their program. Drug users are often the most effective public health messengers for reaching other drug users. Also, hiring drug users provides agencies with direct access to valuable knowledge about the needs and practices of their target populations.

Being gainfully employed in jobs that are valued and recognized as socially important contributes directly to improved self-esteem. Working in a structured environment allows drug users to gain important skills that can facilitate future entrance into other jobs. Working in community-based projects is integral to increased feelings of belonging and contributing to a community. Employing and organizing people who use drugs contributes to civic engagement and political responsibility for drug users and the organization itself.

Examples/practical applications

• Motivational interviewing 
• Strengths-based approach 
• Trauma-informed care 

Important links/resources: 

• Harm Reduction Therapy Center 

References: 

Cheryl White, Harm Reduction at Work – A Guide For Organizations Employing People Who Use Drugs. 

Caring for clients impacted by trauma

Author: Denise Jones

Collaborating with clients who have experienced trauma is a very delicate situation that requires balance. Often when we think about those dealing with trauma, we believe that when they come into our agencies, they should be treated differently.  But treating these clients differently can inadvertently reinforce feelings of stigmatization, creating a barrier instead of fostering trust. It’s essential to approach each individual as a unique person, acknowledging their experiences without letting those experiences define our interactions.

Starting each encounter with genuine questions like “How are you doing today?” and “How can I better serve you?” not only shows care but also empowers clients to express their needs. This approach invites them to share at their own pace and builds a foundation of trust.

Maintaining professional boundaries while being transparent is key. Clients often need to feel that their caseworker is relatable and approachable, which can enhance their willingness to engage more deeply. By focusing on connection rather than diagnosis, we can create a supportive environment that encourages healing and growth. This human-centered approach can make a significant difference in our clients’ experience and outcomes.

Clients impacted by trauma who are also living with HIV require special considerations in care:

• First, trauma and HIV often interact in complex ways, impacting both mental and physical health. Trauma can exacerbate symptoms of HIV, affect immune function, and complicate adherence to HIV treatment. Care needs to be tailored to address these interconnections.
• Second, trauma can lead to mental health issues such as depression, anxiety, or post-traumatic stress disorder (PTSD), which can affect a person’s ability to manage their HIV care. Addressing mental health is crucial for effective HIV management, as untreated mental health conditions can hinder adherence to medication and overall health management.

Trauma-Informed Care

When caring for clients impacted by trauma, focus on safety, empowerment, and acknowledging the impact of trauma in your client’s life. 

Create a safe and empowering environment where your client can feel respected and supported in their journey towards recovery and health management. Make sure your office/space provides a sense of peace and acceptance. Use a warm, calm, and non-judgmental tone. Make it clear that your primary concern is the client’s well-being.

Understand that trauma affects how someone may respond or engage. Be prepared for a range of emotional responses, and never take it personally. Keep in mind what the client may have had to endure just to reach your office (e.g., caution tape in front of their house, or the bus driver passed them up, or drug dealers were blocking the streets). Remember: This client made it to your office, which means they want help.

Here are some further considerations for providing effective and compassionate care to clients impacted by trauma:

1. Integrated care approach

• Coordination of services: Ensure that clients have access to integrated care that addresses their needs in addition to HIV care. This might include coordinating between HIV care specialists and mental health professionals.

2. Harm reduction strategies

• Safe use practices: Clients with a history of trauma may also have experience using substances. Promote harm reduction practices, such as needle exchange programs and safe injection techniques, to minimize the possibility of HIV transmission and other health complications.
• Education: Provide education about safer substance use practices and how they can help in managing HIV and reducing the risk of opportunistic infections.

3. Medication adherence

• Support for adherence: Help clients develop strategies for adhering to their HIV medication regimen. Trauma symptoms can lead to inconsistent medication adherence, so finding practical solutions and reminders can be beneficial.

4. Cultural sensitivity

• Understanding cultural contexts: Be aware of the cultural backgrounds and specific needs of clients, as these can influence the ways they express and cope with their experience of trauma, as well as their experience of living with HIV.
• Respect and inclusivity: Ensure that care is respectful and inclusive of diverse identities, including gender, sexual orientation, and cultural practices.

5. Social support and community resources

• Building support networks: Help clients connect with social support networks, including support groups for people living with HIV and those affected by trauma.
• Access to resources: Assist clients in accessing community resources such as housing, financial assistance, and social services, which can impact their overall well-being and ability to manage both HIV and symptoms of trauma.

6. Addressing stigma

• Reducing stigma: Combat stigma related to both HIV and experiences of trauma. Educate clients and the community to reduce feelings of shame or isolation that may prevent individuals from seeking help.

7. Personalized care plans

• Tailored interventions: Develop individualized care plans that address the specific needs and circumstances of each client. Consider factors such as their current physical and mental health status and their personal goals.
• Flexible approaches: Be prepared to adjust care plans as needed based on the client’s progress and changing circumstances.

References:

• Centers for Disease Control and Prevention (CDC):
  • HIV and Mental Health: Information on how HIV can impact mental health and the importance of addressing mental health needs.
  • Trauma-Informed Care: Overview of trauma-informed care principles and their application in various settings.
• National Institute of Mental Health (NIMH):
  • HIV/AIDS and Mental Health: Provides insights into the mental health challenges faced by individuals living with HIV.
• Substance Abuse and Mental Health Services Administration (SAMHSA):
  • Trauma-Informed Care in Behavioral Health Services: A guide to trauma-informed care principles and practices.
  • National Helpline: Provides confidential assistance for substance abuse and mental health issues.

Caring for clients who are aging with HIV

Author: Gloria Crowell

The client population receiving services through the Ryan White HIV/AIDS Program is rapidly aging, reflecting a significant shift in the demographics of people living with HIV (PLWH) in both the United States and locally in Alameda County. Currently, more than half of all PLWH are 50 or older, and this proportion is projected to increase to 70% by 2030. In 2016 alone, 45% of Ryan White HIV/AIDS Program clients were age 50 and older, highlighting a critical and growing need for age-specific care and services. Within this demographic, approximately 72% are male, 28% are female, and less than 1% are transgender, underscoring the necessity for a nuanced understanding of gender-specific needs, as well.

These statistics underscore the urgent need for medical case managers to be well-equipped with specialized knowledge and resources tailored to the unique challenges of aging with HIV. This includes comprehensive care coordination that integrates Ryan White and medical waiver services with other available resources across the City of Oakland, County of Alameda, and various non-profit agencies. With an aging population that faces higher risks of comorbidities, social isolation, and compounded stigma, it is vital for medical case managers to adopt a proactive and holistic approach. Ensuring access to age-appropriate care, mental health services, social support networks, and community-based programs will be essential to improving the quality of life and health outcomes for this growing demographic of older adults living with HIV.

Practical Focus Areas

People aging with HIV share many of the same health concerns as the general population age 50 years and older. However, people aging with HIV also experience unique health needs as a result of chronic HIV-related conditions that require medical treatment. The providers caring for people aging with HIV may lack specialized training in health issues specific to aging patients. In addition, people aging with HIV—many of whom identify as lesbian, gay, bisexual, transgender, or queer—have unique social needs compared with the general aging population. People aging with HIV would benefit from having a multidisciplinary health care team that knows about community resources available to the aging population, as well as the nuances of healthcare financing and coverage.

Social Challenges Of People Aging With HIV

Social isolation is a profound and growing concern for people aging with HIV, especially for those who have endured the loss of close friends and partners to HIV over the past four decades, or those lacking robust family support systems. This isolation can worsen mental health issues such as depression and anxiety, creating a cycle of vulnerability that affects overall health and well-being. Moreover, the challenge of disclosing medical information becomes more pronounced as individuals age. Many people aging with HIV must navigate complex decisions about which aspects of their medical history to disclose—to healthcare providers, potential employers, or even to friends and family—while managing the stigma that still surrounds the virus.

Food and housing insecurity are also critical concerns, as many aging individuals face precarious financial situations that limit their access to nutritious food and stable housing. The complexity of financial management intensifies with age, particularly when it comes to navigating healthcare benefits like Medicare and Social Security. For people aging with HIV, these challenges are compounded by the high costs of essential medications and treatments for managing both HIV and comorbidities such as cardiovascular disease, diabetes, and osteoporosis. As a result, effective support must encompass not only medical care but also comprehensive assistance with financial planning, benefits management, and access to affordable, safe housing and nutrition to ensure stability and health for this vulnerable population.

What Medical Case Managers Must Prioritize

The aging population living with HIV requires immediate and focused care strategies. Achieving optimal health outcomes for this group hinges on a multidisciplinary approach that balances both medical necessity and quality of life. Addressing the unique and evolving needs of people aging with HIV is not just beneficial—it is essential. The psychosocial burdens that accompany aging with HIV, including depression, post-traumatic stress disorder, social isolation, and pervasive HIV stigma, must be urgently addressed. Without proper support and intervention, people aging with HIV who are isolated from family, community, and social support face devastating health consequences. Breaking this cycle starts with proactive steps: providing robust education to dismantle stigma and creating accessible community spaces for social interaction can dramatically improve their quality of life.

Examples/practical applications

Immediate Action Steps

• Implement coordinated care models: Seamless coordination between medical case managers, primary care providers, and other services is crucial. Fragmented care is not an option—integrated and well-coordinated approaches are essential to improving outcomes and quality of life for older adults living with HIV.
• Strengthen primary care integration: Enhancing integration between HIV-specific care and primary healthcare services is vital. A stronger, more unified primary care approach will better support the complex needs of people aging with HIV.
• Foster self-sufficiency and resilience: Introducing programs that encourage self-sufficiency—such as returning to work or volunteering—can help empower older adults with HIV. Preparing them for a future where financial and support structures, like Ryan White funding, may change, ensures long-term stability and well-being.

Important links/resources

• Optimizing HIV Care for People Aging with HIV: Putting Together the Best Health Care Team – HRSA’s Ryan White HIV/AIDS Program
• HealthHIV Pozitively Aging
• People with HIV are aging, and the challenges are piling up – NPR
• Rethinking HIV in an Aging Society – Council on Foreign Relations

Caring for clients with language needs

Author: Cameron Lincoln

Clear communication is a vital component of effective, trustworthy, and conscientious HIV case management. When people are able to express their health concerns, care plans, and personal goals, they feel empowered and actively involved in their healthcare. But what happens when language barriers get in the way?

Case managers must equip themselves with the necessary tools to bridge communication gaps. Without these tools, clients may not adhere to their medication, might distrust their medical care team, or may feel anxious about upcoming appointments. To address these challenges, we need to develop strategies that facilitate effective communication across languages. It’s reported that 54.2% of Alameda county is English monolingual; the remaining 45.8% of the population is bilingual, limited-bilingual, or “not at all comfortable” in English. Acknowledging the role of language––spoken, written, and body language––is crucial in navigating clients to access healthcare successfully. 

The language we use reflects important nuances through vocabulary, accent, pronouns, and tone of voice. These elements can convey key information about us, such as friendliness, shared identity, and level of formality. For example, clients might react differently when asked, “Do you have receptive/insertive anal sex with men?” versus “When you have sex, do you usually top, bottom, both, or neither—and with which genders?” This becomes more complicated when translating these concepts into other languages; asking a client their pronouns can be particularly challenging in Cantonese or Tagalog, but fairly straightforward in Spanish or French. As community-informed case managers, we can use our words to acknowledge, affirm, and advocate for our patients through language assistance.

Case managers come from diverse backgrounds, cultures, and communities, as evidenced by the languages we speak. Some of us may have learned a second language at home, formally at school, with friends, or from living in another country. For others, English may be the only language we speak. Pairing our clients with linguistically competent medical care teams, providers, and staff members (an approach known as “language concordance”) has been shown to close health gaps. However, simply matching clients and case managers by language is not enough. To go beyond basic language concordance, here are some strategies to ensure comprehensive and compassionate care:

• Match your client’s level of formality, vocabulary, and tone. When possible, try to mirror the language that your clients use. This helps build trust and rapport, making them feel more comfortable and understood. Maintain professionalism while adapting your communication style by observing their cues and asking about their preferences.
• Ask your client how they would like to be addressed. By asking how people would like to be addressed, we show that we are committed to providing respectful and personalized care. This can mean anything from confirming name pronunciation to asking about titles/honorifics (e.g., for English, Ms./Mrs./Mr./Mx./calling them by their first name/etc.). For gender diverse and queer clients, affirming their identity in their language can have a profoundly positive impact. This approach helps bridge cultural gaps and ensures better communication.
• Some clients may prefer English, a mixture of languages, or refuse interpretive services all together. Fluency is not always straightforward, and can change from situation to situation. For some multilingual individuals, they may feel confident explaining their symptoms in English. Other times, clients may be illiterate in their native language and prefer an English copy of forms for family to help translate at home. Some clients might decline using an interpreter all together out of fear they might be recognized by someone within their community. Especially for underrepresented languages/dialects, finding current and accurately translated materials can be difficult, and clients may feel that English or another language would be better. Regardless of their reasons, case managers should always center informed patient consent and offer interpretive services and translated documents as an option.
• Equip your client with additional resources in their language. Several websites, videos, and printouts about HIV can be found online through governmental and community-led organizations. This may require you to search for media in a different language online. Presenting information and materials in a client’s preferred language(s) is crucial; if they have any questions, you can always go through the resources together to ensure their understanding.
• Use your linguistic skills and community knowledge creatively. Not everything can be translated word-for-word. For example, while some communities have adapted U=U into their own languages (such as I=I and K=K), you may need to find alternative ways to communicate the concept of undetectable equals untransmittable. Working multilingually often requires creativity, whether it’s using different words that preserve the original meaning, finding new analogies, or rephrasing questions.
• Be transparent with your language limitations. Sometimes, there are words, medical procedures, or concepts we aren’t able to directly translate; we also might not have the vocabulary range, experience, or confidence discussing these concepts in the target language. It is always OK to ask clients to repeat themselves, to slow down, or even rephrase. This can be a learning opportunity to become more comfortable with new vocabulary, slang, or the expression of complex emotions.
• Know when to find an interpreter. In some circumstances, clients want to be 100% sure they are receiving correct, highly specific, information-dense material, such as complicated medical diagnoses, legal affairs, or financial and housing information. If you’re not entirely confident in your skills to accurately communicate this, it is crucial that you find an interpreter more familiar with the tools and vocabulary needed to handle these topics.
• Come up with a game plan if an interpreter isn’t available. There will be times when translation help is not immediately accessible, such as during a cold call from Social Services, a bill or insurance letter, or an off-site visit. Set up a plan B––consider doing a three-way call, asking the client to send a picture of the letter, rescheduling the visit, calling ahead to prepare for an onsite interpreter, or whatever best works for you and your client.
• Prepare your client for conversations they may have outside the clinic. Providing language assistance sometimes means familiarizing your client with key terms and phrases in English. Clients often desire to communicate their health information to loved ones directly––some of those people may only speak English. In the HIV field, this could include advocating for themselves at pharmacies, or with doctors, sexual partners, or strangers online. Encourage clients to use journals, their cellphones, or notes to track new words and phrases effectively.

Important links/resources

• Wiktionary:  Great to look up specific words and phrases across certain languages. Because it is community driven, though, some terms are being actively updated. Similarly, Wikipedia itself is a great option, especially if there’s a technical word that you might have trouble translating by yourself.

• Looking for information online in someone’s respective language is hard. Thankfully, I have been able to utilize my language skills to find websites and resources to refer to. For most things, I was able to look up “COUNTRY” + “HIV” + department of health/ministry of health/non-profit health organization, or any similar permutation. Here are a few examples for specific languages; please note that terms/vocab/spelling may vary from region to region, even if they share a language:

• Resources in Taiwanese Mandarin

• Resources in LATAM Spanish

• Resources in French

• Resources in Arabic, Indonesian, Khmer, Thai, Vietnamese, and Spanish

• Glossary of 20+ languages

• Resource for terms in various African languages

• The Taiwanese Tongzhi LGBTQ+ Hotline Association has been one of my biggest resources when trying to access information and flyers in Chinese that use LGBTQ+ centered language. They often work with other governmental organizations that talk about 2-1-1 PrEP, difference between PEP and PrEP, LAIs, and the Chinese equivalent of U=U.

• LGBTQIA+ multilingual terminology: This is an online library of glossaries offered in Arabic, Chinese (Traditional and Simplified), Korean, Spanish, Thai, and Vietnamese. It also explains key words in simple phrases, and includes words that may be relevant to peer-based case management. 

References:

• CDC. “HIV and TB Overview: Vietnam.” Global HIV and TB, 2024, www.cdc.gov/global-hiv-tb/php/where-we-work/vietnam.html.
• Chen, WT., Sun, W., Huang, F. et al. Lost in Translation: Impact of Language Barriers and Facilitators on the Health Care of Asian Americans Living with HIV. J. Racial and Ethnic Health Disparities (2023). https://doi.org/10.1007/s40615-023-01674-7
• Ribas-Roca, J., Eamranond, P. (2016). Using a Translator in Integrated Care Settings. In: Benuto, L., O’Donohue, W. (eds) Enhancing Behavioral Health in Latino Populations. Springer, Cham. https://doi.org/10.1007/978-3-319-42533-7_7

Caring for clients impacted by incarceration

Author: Richard Speiglman

People living with HIV who have recently spent time in jail or prison re-enter the community facing many barriers. This section considers the circumstances of these individuals. It continues with a discussion of priority issues affecting them at release and concludes by addressing essential practices for frontline staff and/or case managers who work with formerly incarcerated people with HIV. Re-entry takes place from any number of county jails as well as state and federal prisons. Here we rely on information from Alameda County’s Santa Rita Jail (SRJ).

1. People with HIV in custody

“Incarcerated individuals often come from medically underserved communities, and many have overlapping factors for HIV/AIDS such as substance use disorder, mental illness, poverty, housing instability, and homelessness. Furthermore, behaviors that put individuals at an elevated risk for contracting HIV (e.g., commercial sex work and intravenous drug use) are also behaviors that tend to be criminalized, resulting in an incarcerated population that already has a disproportionately high risk for HIV.”
(Feld et al., page 156)

While the prevalence of HIV or AIDS in custody is five times that in the general population (Feld et al.), the number of known people with HIV reentering the community from any particular institution may be small. Between 2020 and 2022, Alameda County’s Public Health Department knew of eight cases newly diagnosed at SRJ, representing approximately 1.5% of Alameda County’s 500 new cases in that time period.^[1] 

Within jails and prisons, general education about HIV may be lacking. Many incarcerated individuals are unaware of their HIV status prior to being incarcerated and may not want to learn about it while detained. For those who know their status, stigma and fear—such as fear of being labeled as gay or as a sex worker—can lead to nondisclosure of their status during incarceration and/or upon release. That can result in minimizing contacts with health staff to avoid repercussions from being tested or treated.^[2]

Jail medical staff turnover requires routine medical staff training about HIV, as misinformation relayed to clients can have a dangerous impact.

People who are institutionalized—“reprogrammed to live in a cage,” as one informant put it—are likely distressed over the many things out of their control. In the jail or prison, setting a unique world of institutional politics prevails, including powerful do’s and don’ts. 

Only a small proportion of SRJ detainees are offered testing during their incarceration.^[3] Those who likely are in custody too briefly to test include sex workers, people who use drugs, and others at high risk of HIV.

Wellpath provides health care at SRJ. For detainees identified with HIV, a clinician specialist provides treatment. Wellpath is also the release coordinator that links detainees to community care. ^[4] 

Six Wellpath employees, including four RNs, currently work on discharge planning at SRJ. The RN who treats people on medication for chronic conditions spends 20% of their time on those with HIV. 

Discharge planning begins shortly after booking, with intake screening. Those identified as living with HIV are referred to the jail’s HIV provider, who verifies medications and initiates treatment. The discharge planning staff does a second interview and determines where to refer the patient for community services.

Wellpath has six community programs to which they regularly refer patients. Most times, Wellpath reports, patients are released with no problems and no Wellpath follow-up. These are considered “soft landings.” A patient already with an established community agency connection is referred to that provider. But logistics can be compromised. A release planned to take place on a weekday might instead take place in the middle of a weekend night. At such points, according to Wellpath, Wellpath staff spring into action post-release. In any release event, Wellpath arranges for departing patients to be provided with a 30-day supply of HIV medications.

From the perspective of county public health officials, released patients who do not connect with community care need to be contacted and encouraged to seek care. 

Typically, single men who are people of color and depart jail or prison face severe restrictions on resource access. For a convicted sex offender or other felon, opportunities are fewer or non-existent.

Engagement is difficult in part because there are so many issues and priorities for people leaving custody. People coming out of jail/prison really want help. But ironically, some people might get better HIV medical care when they are incarcerated than in the community.

2. Priority issues affecting people with HIV re-entering community

Case management and service coordination need to anticipate the need to address challenges such as minimal work history, insufficient monthly income, poor credit, eviction history, and problematic use of alcohol and/or other drugs, mental health challenges, and unstable or non-existent family connections.

A variety of services may be needed, ranging from criminal record expungement to acquiring budgeting skills, finding decent housing and employment, and negotiating with landlords and property managers.

As a chronic condition, HIV provides eligibility for access to some housing, health care, and income (SSI). That is the case only if one knows and is open about having HIV, and has the support needed to pursue the benefits.

The priority objective, according to some case managers, is for their clients to secure work and save a nest egg. Other goals are to find a source of affordable food, engage appropriate behavioral health services, and secure peer support. Housing access is very challenging. Family reunification is another big goal.

If connections with programs and case managers have been established prior to release from custody, agencies can swiftly meet clients, register them for clinic services, enroll them in health coverage, and coordinate medical appointments, lab tests, prescription medication, and emergency housing. If the client is ready to engage in care, agencies/clinics that are part of the HIV care network have systems in place to engage clients quickly. 

3. Community case management responses

There are personal, social, and system barriers to services linkage and engagement. Client readiness may be compromised by coping and survival mechanisms like substance use, mental health concerns, and disability that incarceration itself produces.

Case managers are where love and support meet. Case managers have clients’ back, understand barriers and other issues, and make connections with priority services and treatment. They listen, help, and teach.

Clients may have massive trust issues if they have experienced lies from jailers, other officials, family members, and others. Case managers must build and maintain trust. They must be authentic, genuine, empathetic, compassionate, and transparent. And they must inform clients that they are not cops and that everything is confidential unless mandatory reporting is involved.

The client leads what to talk about, not the case manager. The client drives the car. The case manager sits in the car with the map. Some of the roads will be slow and indirect. For example, it might take years to find housing that doesn’t trigger violence or substance overuse.

Case managers should supply information about training and employment programs, location of affordable housing, and procedures for clients to gain benefits access through subsidies. 

Be the advocate, the person who repeatedly says to the world what the client’s needs are. Help the client avoid the trauma of having to keep saying it themself. 

You won’t see eye-to-eye with all clients. Sometimes you have to let them know what they have not accomplished to let them move forward.

References: 

• “Alameda County AIDS Housing Needs Assessment” (by Richard Speiglman and Tom Mosmiller for the Housing and Community Development Department, Alameda County Community Development Agency, 2014)
• “Implementing Opt-Out HIV Testing in the Alameda County Jails” by Feld, Steele, Klinedinst, Delgadillo, Garcia, Hinojosa, and Winters (Correctional Health Care, 2023); 
• August–September 2024 interviews with nine staff employed by one community-based agency and one pretrial diversion program, by Wellpath, the agency contracted to provide clinical care and discharge planning as well as other health care services at Santa Rita Jail, and by Communicable Disease Control & Prevention at the Alameda County Public Health Department. This piece does not address the special needs of juveniles who also may need connection to care and treatment.

Footnotes:

1. The small count is in line with the 2012–2017 grant-funded “opt-out” testing program in Alameda County’s jails (Feld et al.). Half had been previously diagnosed but were out of care.
2. A different personal and public health concern involves access to PrEP. At SRJ, PrEP is available if the detainee brings it up to the detention or nursing staff, who may bring a request to the physician. Community case managers need to let their clients know how to ask for PrEP in jails and prisons.
3. Most releases from SRJ and most California jails (but not state or federal prison) take place within a few hours or days of booking. After court or other action ordering a release, the release takes place quickly.
4. The majority of individuals booked into SRJ have little opportunity to work with Wellpath staff. Because of the timing of rapid jail departures, referral to in-house HIV staff doesn’t take place for the majority of people booked into SRJ. Hence, from the perspective of discharge planners, these are not planned releases. Without a plan, release is not coordinated with community agencies.

Caring for Transitional Aged Youth

Author: Ryan Orihood

Transitional aged youth are young adults, typically defined as age 18 to 24, who are navigating the shift from teenagerhood to young adulthood and into adult healthcare. Involving transitional aged youth in HIV treatment provides a unique opportunity to intervene early in a patient’s adult medical care. While HIV rates among young people continue to decline, communities of color and LGBTQ+ communities continue to be disproportionately impacted by HIV (CDC, 2023). Special considerations may be needed to help youth from these populations engage in treatment, adhere to their treatment, and improve health outcomes. 

Prevention

While HIV diagnoses among youth have declined in recent years,rates of other sexually transmitted diseases continue to be high among youth (CDC 2024), pointing to the continued need for HIV prevention and sexual health services for this population. 

Access to resources

With many young people lacking stable or full-time income, their ability to meet basic needs like food, housing, transportation, and insurance is also compromised. Research shows that meeting these basic needs is crucial before engaging in medical care (Thompson et al. 2016). 

Stigma

As of a 2022 report, 90% of adults believe that stigma around HIV still exists. (GLAAD 2022). Many poz youth report being cyberbullied about their status due to HIV stigma. This can complicate treatment and increase mental health concerns (UNICEF 2024). 

Scheduling

Many young people work jobs with inconsistent schedules, complicating booking doctor’s visits. Rigid appointment times may not work best for youth with constantly evolving commitments—including school, family, work, and extracurricular activities. 

Communication

An overwhelming number of young people prefer to message over talking on the phone, due to convenience and to protect their privacy (Lenhart et al. 2010). Reaching young people via phone calls can be challenging. 

Examples/practical applications

• Pair HIV testing with other STI testing for one-stop, full-panel testing. Youth who are sexually active should routinely test for STIs and HIV. Youth who test HIV negative should be referred to PrEP medication. 

• Offer HIV and STI testing services at other places youth frequent, such as schools, after-school programs, and other community events that engage young people.

• Provide case management and resources for youth to meet their basic needs first. Include referrals for community food distribution sites, housing wait lists, transportation for non-urgent medical appointments, and legal resources. 

• Host drop-in services each week on the same afternoon for youth to receive medical care. 

• Encourage youth to register for and communicate through agency-approved online messaging platforms, such as My Health Online. 

Important links/resources

• AIDS Legal Referral Panel (ALRP): (415) 701-1100
• Alameda County 211
• TakeMeHome HIV and STI Testing

References: 

• Center for Disease Control (2023). HIV Declines Among Young People and Drives Overall Decrease in New HIV Infections. https://www.cdc.gov/media/releases/2023/p0523-hiv-declines-among-young-people.html. 
• CDC. HIV Testing and Youth. https://www.cdc.gov/healthyyouth/youth_hiv/hiv-information-and-youth.htm. 
• CDC. Fast Facts: HIV in the U.S. by Age. https://www.cdc.gov/hiv/data-research/facts-stats/age.html. 
• Thompson, T., Kreuter, M., and Boyum, S. (2016). Promoting health by addressing basic needs: Effect of problem resolution on contacting health referrals. Health Educ Behav. 2016 Apr; 43(2): 201–207.
• GLAAD. 2022 State of HIV Stigma Report. https://glaad.org/endhivstigma/2022/
• UNICEF (2024).Cyberbullying: What is it and how to stop it. Accessed 20 August 2024. 
• https://www.unicef.org/end-violence/how-to-stop-cyberbullying#3
• Lenhart, A., Ling, R., Campbell, S., & Purcell, K. (2010). Teens and mobile phones. Pew Internet and American Life Project. Retrieved March 1, 2017, from http://www.pewinternet.org/~/media//Files/Reports/2010/PIP-Teens-and-Mobile-2010-with-topline.pdf [Ref list]

Appendices

Sub-sections:

• Housing Assessment

Housing Assessment

A housing assessment should provide the following information: 

• Client’s preferences, needs and concerns related to future housing, including preferred cities or neighborhoods. Locations that are unworkable due to personal history, distance from job, school or support network, transportation issues, reduced access to medical care and services, etc. 

• Proof of identity for each adult household member (original copies of Social Security card and current driver’s license or DMV ID), and Social Security cards and birth certificates for minors. The medical case manager should ask if the client will need assistance with obtaining documents, i.e. becoming “document ready”

• Current address, phone number, email address, emergency contact information, and if needed, client’s alternate mailing address 

• Source and amount of income for all members of the household and information about assets, including bank accounts

• If applicable, proof of current enrollment for college students who are client’s dependents and living in the client’s household, and for client or other adults who are full-time students 

• Current housing situation, including full address and information re: rent amount, utilities that are paid by client, whether the client receives a housing subsidy. Number of others in the current household, issues with affordability, and concerns about the building and/or neighborhood. Details about previous residences in CA, other states, or outside the US if available, with as much information about former landlords as possible. Five years of housing history  is optimal 

• Current landlord/property manager’s name, mailing address, phone number and email address. Information about any issues with current landlord related to non-payment of rent, lease violations, past attempts to evict, damage to unit, poor housekeeping, adversarial relationships with neighbors, etc. 

• Current or past status as insecurely housed, including periods of homelessness, stays in emergency shelter and temporary stays with friends or relatives, i.e. “couch-surfing.” Past or current engagement with County homelessness services or street health teams, including assessment through the County’s Coordinated Entry System

• Current or past residence in transitional housing, independent living homes, board and care facilities, or residential treatment programs

• Special housing needs, such as housing designed to accommodate a disability or chronic illness. Possible need for Requests for Reasonable Accommodations related to the need for an in-home care provider or approval of an emotional support animal or service animal

• Credit history, history of bankruptcy, and need for “credit clean-up” work that should be started immediately in order to prepare for future assistance with housing

• History of having been evicted or of vacating the home due to likelihood of eviction, along with an explanation of the issues (unpaid rent vs. lease violations), unit address, landlord information, whether the unit was subsidized, and how long ago this happened 

• Involvement with the criminal justice system, including felony convictions, convictions for drug crimes and crimes of violence, date of release from incarceration and/or completion of parole. (Note: Berkeley and Oakland have ordinances restricting criminal background checks but federally subsidized programs are exempt from these local restrictions. Most misdemeanor convictions don’t impact a client’s eligibility for affordable housing)

• Lifetime requirement to register as a sex offender in any state (290 registrant status)