When it is and why it matters
HIV/AIDS support groups and long-term survivor communities have sustained people through decades of loss, stigma, and change. The HIV.gov support group directory connects people to HIV/AIDS support groups nationwide. National HIV/AIDS Long-Term Survivors Day is observed on June 5 each year. The date marks the anniversary of the first official report of what would become known as the AIDS epidemic, published by the CDC on June 5, 1981.
The day honors people who have been living with HIV since before 1996, the year antiretroviral therapy became widely available in the United States. Many long-term survivors lost friends, partners, and entire communities in the years before treatment existed. They carry that history alongside the ongoing realities of aging with HIV today.
Long-term survivorship is a distinct experience. It is not the same as being newly diagnosed in an era when HIV is a manageable condition. This day exists to make that distinction visible, and to affirm the need for community, peer connection, and sustained support for this population.
What the research says
Research on HIV long-term survivors consistently shows elevated rates of mental health challenges alongside unmet needs for peer support:
- Long-term survivors show high rates of depression and PTSD, partly driven by the social isolation of surviving losses that are still not widely acknowledged outside the community (National Resource Center on Aging and HIV).
- In 2022, approximately 21% of people living with HIV reported needing but not receiving mental health services in the past 12 months (HIV.gov).
- Peer support for people living with HIV improves retention in care, antiretroviral therapy adherence, and viral suppression compared to standard clinical care alone (Ware et al., 2021).
- Long-term survivors frequently report fragmented access to healthcare, ongoing stigma and discrimination in clinical settings, and limited access to mental health services tailored to their specific experiences (PMC, 2025).
The AIDS Memorial Quilt, begun in 1987 by the NAMES Project, gave the community a collective way to grieve losses that were often not publicly acknowledged. It remains one of the most powerful examples of community-led memorialization in American history. Many long-term survivors carry the weight of that era alongside the complexities of living well today. Peer support offers a space to hold both.
Groups for HIV/AIDS survivors and people living with HIV in our directory
Our directory includes support groups for people living with HIV and AIDS, including groups specifically for long-term survivors. These groups offer peer connection, shared understanding of survivorship history, and a space to talk about the ongoing realities of aging with HIV.
Some groups in the directory are led by people with lived experience. Others are facilitated by mental health professionals who specialize in HIV-related issues. Browse by location or format to find what fits your situation.
How to choose a group
- Long-term survivor specific vs. general HIV support. Some groups are designed for people diagnosed before 1996. Others welcome anyone living with HIV. If your survivorship history is a central part of what you want to discuss, look for a long-term survivor group.
- Grief and trauma focus. Some groups address the specific grief of losing people in the early AIDS crisis. If that is something you carry, a group with that focus may feel more relevant than a general support group.
- Online vs. in-person. Online groups can connect you with other long-term survivors across geographic distances, which matters in a community that has been geographically dispersed over decades.
- Intersecting identities. Some groups are organized around the intersection of HIV with LGBTQ+ identity, race, or gender. If those dimensions of your experience matter to you in this context, look for a group that reflects them.
Other resources
- HIV Long-Term Survivors Awareness Day: hivlongterm.com — community history, resources, and events
- The NAMES Project AIDS Memorial Quilt: aidsquilt.org — history, memorialization, and community
- National Resource Center on Aging and HIV: aginghiv.org — resources for older adults living with HIV
- HIV.gov: hiv.gov — federal resource for HIV prevention, treatment, and care
- 988 Suicide and Crisis Lifeline: Call or text 988 — available 24/7
Frequently asked questions
What is the definition of a long-term HIV survivor?
The term generally refers to people who were diagnosed with HIV or AIDS before 1996, when combination antiretroviral therapy became available. These are individuals who survived before effective treatment existed and who carry both the medical and psychological history of that era. Some organizations and communities use a slightly different threshold, but pre-1996 is the most common definition.
Why do long-term survivors have specific mental health needs?
Long-term survivors often experienced the loss of large numbers of friends and partners in a compressed period, many of whom died before they could receive care. That cumulative grief, combined with survivor’s guilt, stigma, and the physical effects of aging with HIV, creates a distinct set of mental health challenges that are not always addressed in general support settings.
Can people newly diagnosed with HIV join these groups?
It depends on the group. Some groups are specifically for long-term survivors. Others welcome anyone living with HIV. Review the group description carefully, or reach out to the facilitator if you are unsure. Being newly diagnosed is a distinct experience, and there are groups designed for that stage as well.
Are these groups confidential?
Most support groups operate under an expectation of confidentiality among members. What is shared in the group stays in the group. Group leaders typically set this expectation explicitly at the start of each meeting. If confidentiality is a concern, ask the group facilitator about their approach before your first session.
How do peer support groups differ from medical care for HIV?
Support groups address the emotional and social dimensions of living with HIV. They do not replace medical care, but they complement it by offering peer connection and a space to process experiences that a doctor’s appointment does not cover. Research shows that peer support can actually improve treatment outcomes by increasing engagement with medical care.
References
National Resource Center on Aging and HIV. (n.d.). Long-term survivors. https://aginghiv.org/communities/long-term-survivors/
HIV.gov. (n.d.). Aging with HIV. https://www.hiv.gov/hiv-basics/living-well-with-hiv/taking-care-of-yourself/aging-with-hiv
Ware, N. C., et al. (2021). The effectiveness of peer-support for people living with HIV: A systematic review and meta-analysis. PLOS ONE. https://pmc.ncbi.nlm.nih.gov/articles/PMC8211296/
PMC. (2025). “A cure might help, but it won’t erase it all”: A qualitative study of policy challenges and priorities for long-term survivors of HIV in the United States. https://pmc.ncbi.nlm.nih.gov/articles/PMC12231189/
My Therapy Groups is a directory. Group leaders write their own listings, and we do not vet, supervise, or endorse the groups listed here. We are not a clinic and we do not provide clinical services or guarantee outcomes. That is the group’s work, not ours. If you are in crisis, call or text 988. We will be here when you are ready.
Peer-led HIV/AIDS support groups differ from clinician-led groups in important ways. Online vs in-person support groups each have advantages for people managing long-term illness.
HIV/AIDS support groups for long-term survivors address topics that newer diagnosis groups often do not — survivor’s guilt, aging with HIV, and the grief of losing peers over decades. HIV/AIDS support groups online are especially active and accessible for people in areas with limited in-person options.
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