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    Challenges and Resiliency of HIV Long-Term Survivors in San Francisco

    By Dr. Meredith Greene–

    Sam was 25 when he was given the news that he only had a year to live. Although he had heard about a mysterious new illness, this was not 2020 and COVID-19. It was 1983, and Sam was diagnosed with AIDS. Now 40 years later, Sam was not prepared to see 26 let alone age 65. Over the next several years, he did not die but watched many of his friends and social networks disappear. In addition to AIDS, he survived a cancer diagnosis and still deals with painful neuropathy from participating in one of the early clinical trials of AZT.

    Sam is not alone. Currently, half of all people living with HIV are over the age of fifty with almost 75% of people with HIV in San Francisco age 50 or older. Most older adults living with HIV have aged with HIV and many are HIV Long-Term Survivors (LTS) like Sam. Yet too often, the stories of HIV LTS are overlooked, their voices excluded from international conferences, and many feel invisible—a “silent majority,” especially in a youth-focused culture.

    Who are HIV LTS? Persons like Sam, diagnosed with HIV/AIDS before the advent of highly active antiretroviral therapy (HAART) in 1996, are included. Some also include those who have lived with HIV for more than 10 or 20 years—including those who were perinatally infected with HIV and are now in their 30s and 40s. HIV LTS can also include HIV negative persons who lived through the early years of AIDS—which may include many readers of the Bay Times. HIV LTS are a diverse group with a variety of lived experiences, reflecting the communities that continue to be disproportionately impacted by HIV, such as Black and Latinx communities as well as the LGBTQ+ community.

    The transformation of HIV/AIDS from a fatal illness to a chronic disease is one of the biggest successes of modern medicine. However, new challenges exist for HIV long-term survivors. Chronic inflammation from HIV and side effects of antiretroviral drugs increase the risk of other chronic conditions like heart disease and osteoporosis. As a result, many long-term survivors are living with multiple chronic conditions often resulting in multiple medications. A study of older adults with HIV in Canada found that while the number of antiretroviral pills has decreased over time, older adults are frequently taking the same number of pills as in the 1980s and 1990s—now just for other diseases instead of HIV.

    Dr. Meredith Greene with Dr, Robert Mansfield and celebrity host Carson Kressley at AIDS Walk San Francisco (2017)

    Many, like Sam, suffered traumatic loss of multiple people over years. They are isolated—not just because of the loss of social networks in some communities, but also HIV stigma, as well as now ageism. Some LTS experience PTSD symptoms and are reluctant to form new connections for fear of losing more people. The communities disproportionately impacted by HIV/AIDS were already marginalized and suffering from discrimination, which also affects mental health.

    Yet despite these challenges, HIV LTS demonstrate incredible resilience and abilities to face these new challenges. Communities that were already embattled for their rights had to continue to come together to support each other through the crisis. That tradition and support continues—seen in the care circles of friends who rally around someone who is sick (even if not from AIDS), or in the person continuing to be open to a new relationship even after losing three partners, and in the tradition of giving back to the community and especially in advocacy.

    Community organizations, social and medical services are beginning to address the challenges faced by HIV LTS as they age.  The Bay Area arguably has more services available than other parts of the country. San Francisco is where Let’s Kick Ass (AIDS Survivor Syndrome) originated that helped develop HIV Long-Term Survivors Awareness Day on June 5. Longstanding organizations like Shanti and San Francisco AIDS Foundation have dedicated programming for LTS such as “Honoring Our Experience” and the 50+ Network. AIDS Legal Referral Panel serves the legal needs of the HIV/AIDS community, especially the complex legal needs of older people with HIV. PRC also provides legal advocacy services around healthcare and disability. UCSF has HIV geriatric medicine services through the Silver Project at 360 clinic and the Golden Compass Program at San Francisco General Hospital. Yet many LTS express frustration that despite completing multiple needs assessments over the past 10 years, services have not kept pace with the changing demographics of people with HIV.

    The need for additional mental health services was the top concern mentioned by all the long-term survivors interviewed for this story. The isolation experienced by many LTS is closely intertwined. Long wait lists for affordable mental health services are too common especially since the onset of the COVID-19 pandemic, and despite the increase in telehealth options. This is critical, as for some LTS the start of the COVID-19 pandemic triggered emotions experienced in the early days of AIDS.

    Activities and support groups are important for shared experiences and community building, but additional funding to support these services is needed. Additionally, while groups can help with processing traumatic losses, for many individuals one on one therapy to help manage and treat this trauma will be required. This will also require culturally competent psychotherapy. LTS expressed concerns not only about the shortages of HIV specialists, geriatricians, and mental health providers but also that the knowledge and familiarity with LTS’ experiences will be lost among newer providers. Many HIV specialists are now retiring who worked during the early days of AIDS.

    Enhanced services are also needed to address the unique challenges facing LTS around employment and disability. For example, Sam quit his job when he was diagnosed with AIDS and has been on disability for years. He did not plan for retirement as he was not expecting to live even a few years. As he turns 65, his disability benefits will switch to Social Security and will likely decrease. He, like many others, may need to consider returning to work after being out of the workforce for many years. Some of the financial concerns relate directly to the high cost of housing—the other major service gap identified by LTS for this article. For people with HIV, housing is critical to health, as it is well known that people with unstable housing and homelessness in San Francisco are less likely to have viral suppression.

    Once again, in spite of these challenges, HIV long-term survivors in San Francisco demonstrate their resilience and lead the way in advocating for the needs of all long-term survivors and those aging with HIV. The SF Principles started in 2020 in the height of the COVID pandemic by a group of San Francisco advocates, demanding training for medical professionals, adequate mental health and health services and the inclusion of LTS in research and service development ( ).

    The Board of Supervisors passed a resolution in May 2022 supporting the SF Principles, while also reaffirming support for the Getting to Zero initiative and urging the Department of Public Health to sustain funding for organizations providing HIV/AIDS safety net services. Additionally, in 2022, the Glasgow Manifesto was developed by an internal coalition of older people with HIV who demand tailored and holistic aging services, a focus on quality of life, and meaningful involvement in decisions focused on older people with HIV ( ).

    To meet the demands outlined in the SF Principles and the Glasgow Manifesto, more coordination is needed between aging and HIV services. Legislation, such as SB 258 signed by Governor Newsom in 2021 identifying older adults with HIV as a population with “greatest social need” in the Older Californians Act, should in theory help to facilitate this but will depend on implementation. LTS shared additional suggestions such as fostering intergenerational connections and going back to original service models for AIDS but now adapted for aging needs including adult day health programming and intensive case management.

    In the spirit of “Aging Unbound,” the theme of this year’s Older Americans Month, we should learn from the advocacy of HIV long-term survivors and work to improve aging services. The spirit of “nothing about us without us” should be better implemented, for those with HIV and for aging services in general. Interested readers can join organizations like the HIV Advocacy Network, or pick an area of focus (like housing or mental health) and advocate on that issue. Even the simple act of listening and sharing stories is powerful—so the history of the early days of the AIDS epidemic is not forgotten.

    As we all have recent reminders of pandemics with COVID-19 and Mpox, it is critical to remember that HIV is an ongoing pandemic without a vaccine or a cure. We must remember HIV long-term survivors and continue to advocate for improved services as they age.

    Dr. Meredith Greene is an Associate Professor of Medicine in the Division of Geriatrics at the University of California, San Francisco. She is a geriatrician and American Academy of HIV Medicine Specialist who works with older adults living with HIV and HIV long-term survivors.

    Special Section Aging in Community by Dr. Marcy Adelman
    Published on May 4, 2023