Creating Spaces for Survival: HIV Mental Health Support in Crisis
Julio J. Fonseca
I wonder now, as I look around me, who will pick up the torch? — Pedro Zamora, 1994
Silence is the deadliest weapon.— Marlon Riggs, Director/Narrator, Tongues Untied, 1989
I wonder now, as I look around me, who will pick up the torch? — Pedro Zamora, 1994
Silence is the deadliest weapon.— Marlon Riggs, Director/Narrator, Tongues Untied, 1989
As a member of the LGBTQ+ community writing for this column, I have thought carefully about how to address the mental health impacts of HIV, a condition that profoundly shaped LGBTQ+ history and community formation yet affects people of all sexual orientations and gender identities. This article may feel slightly different in tone from previous articles, but my 25+ year advocacy career lends itself well to addressing this topic.
My years as a trainer and educator in the HIV advocacy movement taught me to lead with this truth: while gay and bisexual men account for 70% of new US HIV diagnoses, heterosexual contact accounts for 22% (Centers for Disease Control and Prevention [CDC], 2024a). Black women, who represent 13% of the female population, account for 50% of HIV diagnoses among women (Kaiser Family Foundation [KFF], 2025a). Transgender women, particularly Black transgender women, face an HIV prevalence of 62% in major cities (Becasen et al., 2019). In my previous work in HIV advocacy and education, and my current role as a volunteer community mentor, I have engaged in the full range of experiences of people living with HIV. What they have in common is not sexual orientation or gender identity. It is an urgent need for mental health support, and the devastating reality that the infrastructure providing this support is collapsing.
Access to the medical care that makes HIV manageable is collapsing. The crisis began globally and has spread domestically. In January 2025, the Trump administration froze PEPFAR, which provided antiretroviral therapy to 20.6 million people worldwide (Alemnji et al., 2025). In the United States, administrative obstruction preceded Congressional action: by August 2025, the CDC had underspent HIV prevention funding by $167 million, Ryan White by $105 million, and SAMHSA mental health services by $860 million despite Congressional appropriation (HIV-HCV Co-Infection Watch, 2025). An October 2025 survey of 526 HIV clinicians found 70% reporting service disruptions, with mental health care, housing, and gender-affirming care most affected (Emergency HIV Clinical Response Task Force, 2025). The House FY2026 bill proposed eliminating $1 billion in CDC HIV prevention funding and cutting Ryan White by $525 million, including the SAMHSA Minority AIDS Initiative, which provides mental health treatment and AIDS Education and Training Centers that train community health workers (HIV+ Hepatitis Policy Institute, 2025). The mental health infrastructure is collapsing, peer support is excluded from PEPFAR, mental health integration is targeted for elimination, and workforce training is zeroed out.
Mental Health Support in HIV Care: Why It Matters
People with HIV experience depression and anxiety at rates two to three times higher than the general population, with disparities shaped by intersecting marginalization (Ciesla & Roberts, 2001; Jallow et al., 2024). Among gay and bisexual men living with HIV, unmet mental health needs vary by race and ethnicity (CDC, 2024c). For Black women and Black transgender women, HIV stigma compounds with racism, sexism, and poverty to intensify mental health challenges (Smith et al., 2025).
Long-term survivors, defined as people diagnosed with HIV before 1996 or who have lived with HIV for more than ten years (Ahmed et al., 2025), face particularly severe mental health challenges. GMHC’s Research on Older Adults with HIV (ROAH) 2.0 study found that among 197 participants aged 50 and older, 83% were first diagnosed with depression over five years ago, yet nearly half of those with depression received no mental health care in the past year. Three quarters reported that their emotional support needs were not fully met, with 21% scoring “lonely” and 22% “very lonely.” The study also documented profound trauma: 51% reported sexual abuse before age 16, and 52% had been victims of intimate partner violence by a partner (ACRIA, 2021). A recent qualitative study of 32 long-term survivors aged 60 and above identified mental health and cognitive decline as the second-highest priority need, with participants emphasizing survivor guilt, depression, anxiety, and unresolved grief as ongoing challenges (Ahmed et al., 2025). The Reunion Project, a national community-led alliance of long-term survivors, has consistently identified mental health, including depression, anxiety, PTSD, isolation, and loneliness, as a “huge concern” through their town halls and advocacy work across the country (Berry, 2022).
The field has evolved from formal group therapy to peer-led support, not because clinical care matters less, but because lived experience brings unique value. The research supports this shift. Meta-analyses confirm that group interventions reduce depressive symptoms among people with HIV (Himelhoch et al., 2007; van der Heijden et al., 2017). Peer support improves retention in care and taking antiretroviral therapy as prescribed (Berg et al., 2021). Group support psychotherapy delivered by trained lay health workers in Uganda reduced depression to less than 1% compared with 28% in the control group at 6 months post-treatment, for $13 per disability-adjusted life year (Nakimuli-Mpungu et al., 2020). Group interventions addressing intersectional stigma reduce depression, anxiety, and HIV risk behaviors among Black and Latino gay and bisexual men (Jackson et al., 2022).
The honest evidence gap: most research measures viral suppression and taking treatment as prescribed, rather than mental health as a primary outcome. A further complication of note is that CDC data has been politicized. Each page of HIV incidence and prevalence features a disclaimer: Per a court order, HHS is required to restore this website to its version as of 12:00 AM on January 29, 2025. Information on this page may be modified and/or removed in the future subject to the terms of the court’s order and implemented consistent with applicable law. Any information on this page promoting gender ideology is extremely inaccurate and disconnected from truth. The Trump Administration rejects gender ideology due to the harms and divisiveness it causes. This page does not reflect reality and therefore the Administration and this Department reject it. Additional independent research is needed as programs are being cut before their full value is known. People need both peer support and clinical mental health care. Both are now threatened.
Calls to Action: Ways therapists can respond
Until we get our act together, all of us, and until we learn to plug in with each other and fight and make this president listen, we are as good as dead. — Larry Kramer, 1991
So far, this may have been an overwhelming read, given the many challenges we as clinicians face, often in parallel with those our clients face. The following recommendations come with the understanding that we are already stretched thin, that burnout is real, and that these are considerations and invitations, not mandates. It is important to consider our capacity and position. We are uniquely positioned to observe some of these impacts and losses, and to see the human cost in real time. Our clinical knowledge should inform moral responsibility and uphold our ethics.
Partner with Community Organizations to Understand Needs
One of the most important things we can do as clinicians is maintain our curiosity and not make assumptions about what communities need. Partnering with HIV service organizations, particularly those that have strong connections with people living with HIV, community health centers, faith-based organizations, and immigrant rights groups that are already doing this work with limited resources. Offer your expertise in group facilitation, mental health assessment, and program evaluation. Co-design interventions with people who have lived experience of HIV. Ensure that services are linguistically accessible and culturally grounded. Understanding our lens and where others may benefit from your expertise and you from theirs is invaluable and will support your credibility.
Build Coalition and Community Connection
Mental health providers, HIV clinicians, public health workers, community organizers, and people with lived experience working together increase the power of community. Consider joining local HIV planning councils or participating in Ryan White planning bodies. Connect with other mental health providers serving people with HIV to share resources and strategies. Coalition building creates political power, and political power protects and potentially expands HIV and mental health funding.
Creating Supportive Spaces
With a community-informed understanding of needs and PLHIV-informed, create spaces where none exist. Offer to facilitate groups on a sliding scale or pro bono basis. Partner with organizations that serve Black women, transgender communities, and immigrant populations to ensure groups are culturally responsive and address intersectional stigma. These spaces do not need to be formal psychotherapy groups to be valuable. Peer-led support facilitated by trained therapists can provide the emotional connection and mental health benefit that people desperately need.
Advocate for Your Clients
Advocate for your clients at every level. Contact your congressional representatives about HIV funding. Submit public comment when federal agencies propose cuts to Ryan White, PEPFAR, or SAMHSA programs. Testify at state and local hearings about mental health funding. Write op-eds for local media about what you are seeing in your practice. Use your professional credentials to validate what people with HIV already know: mental health support saves lives and cutting it will kill people. Advocacy is not separate from clinical work. It is essential to it.
Generating Evidence through Research
Generate evidence through research and documentation. Data does not lie, and we need more of it. If you run groups for people with HIV, measure outcomes. Document what you see: how many people are you serving, what are their needs, what barriers do they face, and what happens when services are cut. Partner with researchers to evaluate programs, donate time to research studies, write case studies for publication, and apply for grants to fund rigorous evaluation of community-based interventions. The evidence gap exists because this work has been undervalued and underfunded. We can close that gap, but only if we commit to documenting what we do and proving what we already know: this work matters.
References
ACRIA. (2021). Findings from the Research on Older Adults with HIV 2.0 San Francisco Study. GMHC National Resource Center on HIV & Aging. https://aginghiv.org/wp-content/uploads/2021/03/ROAH_2.0_SanFrancisco_ACRIA_HIV_Aging_White_Paper_FINAL-2.pdf
Ahmed, S., Yelverton, V., Tang, A., Blankson, J. N., Karris, M. Y., Little, S. J., Hoenigl, M., Morris, S. R., Margolis, D., Smith, D. M., Berry, J., & Dubé, K. (2025). “It’s not just HIV anymore”: A qualitative exploration of health, research, community, and mental health priorities of long-term survivors of HIV in the United States. AIDS Care, 1-10. https://doi.org/10.1080/09540121.2025.2584603
Alemnji, G. A., Lwamba, E., & Kharono, B. (2025). Partial waivers: PEPFAR’s 2025 funding suspension and the looming HIV/AIDS catastrophe in Sub-Saharan Africa. PLOS Global Public Health, 5(3), e0004077. https://doi.org/10.1371/journal.pgph.0004077
Berry, J. (2022, June 6). In the spotlight: Long-term survivors [Interview]. amfAR, The Foundation for AIDS Research. https://www.amfar.org/news/long-term-survivors/
Becasen, J. S., Denard, C. L., Mullins, M. M., Higa, D. H., & Sipe, T. A. (2019). Estimating the prevalence of HIV and sexual behaviors among the US transgender population: A systematic review and meta-analysis, 2006–2017. American Journal of Public Health, 109(1), e1–e8. https://doi.org/10.2105/AJPH.2018.304727
Berg, R. C., Page, S., & Øgård-Repål, A. (2021). The effectiveness of peer-support for people living with HIV: A systematic review and meta-analysis. PLOS ONE, 16(6), e0252623. https://doi.org/10.1371/journal.pone.0252623
Centers for Disease Control and Prevention. (2024c). Behavioral and clinical characteristics of persons with diagnosed HIV infection—Medical Monitoring Project, United States, 2022 cycle (June 2022–May 2023). HIV Surveillance Special Report, 36. https://www.cdc.gov/hiv/library/reports/hiv-surveillance/vol-36/index.html
Centers for Disease Control and Prevention. (2024a). Fast facts: HIV in the United States. US Department of Health and Human Services. https://www.cdc.gov/hiv/data-research/facts-stats/index.html
Centers for Disease Control and Prevention. (2024b). Fast facts: HIV and gay and bisexual men. US Department of Health and Human Services. https://www.cdc.gov/hiv/data-research/facts-stats/gay-bisexual-men.html
Ciesla, J. A., & Roberts, J. E. (2001). Meta-analysis of the relationship between HIV infection and risk for depressive disorders. American Journal of Psychiatry, 158(5), 725–730. https://doi.org/10.1176/appi.ajp.158.5.725
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Emergency HIV Clinical Response Task Force. (2025, October). National HIV clinician survey warns of HIV service disruptions. HIV Medicine Association. https://www.hivma.org/~/link/a43bb710b2ba49f4a42e952dd7ec4c17.aspx
HIV+Hepatitis Policy Institute. (2025, September 2). House Republicans go way beyond president’s budget by ending all HIV prevention & slash AIDS care by 20% [Press release]. https://hivhep.org/press-releases/house-republicans-go-way-beyond-presidents-budget-by-ending-all-hiv-prevention-slash-aids-care-by-20/
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Kaiser Family Foundation. (2025b). The impact of HIV on women in the United States. https://www.kff.org/hivaids/fact-sheet/the-impact-of-hiv-on-women-in-the-united-states/
Smith, L. C., Turan, J. M., White, K., Stringer, K. L., Burkholder, G. A., Phosavanh, K., Rice, W. S., & Turan, B. (2025). Intersectional HIV stigma among Black women: Regional differences and implications from the Black Women First Initiative. American Journal of Public Health, 115(S1), S75–S84. https://doi.org/10.2105/AJPH.2025.308037