East Bay HIV/STI Case Management Manual

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.