East Bay HIV/STI Case Management Manual

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.