By Dr. Marcy Adelman–
In little more than a decade, 70% of people living with HIV will be over the age of 50. Today the challenge for people living with HIV in the United States is no longer about life or death but about quality of life. Across the country and in San Francisco, long-term survivors have vigorously advocated for social and mental health services targeted to the unique needs of their aging community and for far too long their voices have not been heard.
Priority Needs of HIV Long-term Survivors
When I asked Jesus Heberto Guillen Solis, founder of the HIV Long Term Survivors Group, about what he saw as the priority needs of the community, he spoke to the pressing need for mental health services and social programs to engage and empower long-term survivors of HIV.
“Survivor’s guilt, PTSD, depression and anxiety can keep us in isolation,” Solis told me for the San Francisco Bay Times. “Sometimes it is hard just getting up in the morning, even if it is to access the services you need.”
He suggested that San Francisco should look into funding a service model that brings social and therapy services into people’s homes as an effective way to break the cycle of depression and isolation experienced by many long-term survivors. He continued, “But whatever mental health services we receive, the service provider needs to understand our history and how HIV and our medications affect us.”
He shared his frustration that, all too often, his request for mental health services have been dismissed. “I’m told, ‘Your community is already being served by existing services.’ But we aren’t being served by existing services. There needs to be better outreach to break through the isolation and more services directly targeted for long-term survivors.” Fortunately, no matter how frustrating the responses have been, Solis and other activists have never given up.
A New 17.3-Million-Dollar Initiative
At the beginning of 2019, Gilead Science, a company that develops and delivers lifesaving medication, announced a significant investment in the health and well-being of long-term survivors of HIV. Gilead has launched a 17.3-million-dollar initiative, HIV Age Positively, to support the needs of older adults living with HIV. Finally, the voices of long-term survivors have been heard.
Bill Hirsch, Executive Director of San Francisco’s AIDS Legal Referral Panel, applauded Gilead’s investment. “Gilead brought experts, activists and long-term survivors together,” he said. “They heard from the long-term survivor’s community what they need and responded with an initiative that doubles down on the direction Gilead has been going in for some years now. This initiative is a significant investment in an under-served community whose social and mental health needs are clear and compelling.”
A total of 30 grantees, both national and local organizations, from around the country have received funding in one of three areas of focus—increased coordination between health systems and community programs, stigma and isolation reduction through education and training, and increased support to community serving programs and HIV aging positive policy changes.
National programs include the funding of the country’s first National Resource Center for HIV and Aging (Gay Men’s Health Crisis, Inc.—GMHC), the improvement of policy and care coordination through data collection (HealthHIV), the creation of a national action oriented HIV/Aging think tank ( SAGE ), and the development and implementation of a national HIV and aging cultural competency training program for nurses ( The Association of Nurses in AIDS Care ).
According to Tez Anderson, the 58-year-old founder of Let’s Kick ASS, a long term-survivor advocacy organization, and a consultant on the GMHC’s National Resource Center grant, “A lot of people don’t know where to go for resources. Even for someone like me who has been doing this for so long, it can be overwhelming at times. There is so much you need and need to know, and it seems to always be changing. You choose a provider for the medication benefits only to have the prescription change on you in a very short space of time. For people who take 10 plus medications a day, and I take 20 drugs, it can get really hard to stay on top of it. Arranging your medication benefits is just one of many things you have to do to take care of yourself. Having medication and insurance information in one place will make a huge difference in people’s lives.”
Giliad Initiative Grantees
Currently, four Gilead initiative grantees are local San Francisco nonprofits: Project Open Hand, San Francisco AIDS Foundation, Shanti Project, Inc., and the University of California San Francisco’s Golden Compass Program.
1.Project Open Hand, a nonprofit organization that provides warm meals for seniors, adults with disabilities and people living with HIV and other illnesses, received a grant for $700,000 over 3 years to create an intense case management program to educate and empower their constituents to better maintain quality of life through healthy nutrition.
2. San Francisco AIDS Foundation (SFAF) will receive $600,000 over the next 3 years to expand the agency’s programs to reduce social isolation and housing insecurity and to increase the overall health and wellness of long-term survivors and other seniors living with HIV. Vince Crisostomo, Program Manager of SFAF’s 50+ Network and Chair of the San Francisco Department of Aging and Adult Services’ HIV and Aging Work Group, has been living with HIV for more than three decades. His 50+ program, as well as the other services at SFAF, will now have the resources to grow. Crisostomo has been a strong, clear and persistent voice for social and mental health services, and for more public as well as private funding for his community.
3. Shanti Project, Inc., provides a continuum of services for people living with HIV/AIDS. The agency will receive $700,000 in funding over three years to expand capacity of existing programs, specifically to assist people in navigating and managing services and to help people access Shanti services that provide emotional and practical peer support. In an email correspondence with Shanti’s Executive Director, Kaushik Roy, he expressed his gratitude for the breadth of services funded by Gilead’s Age Positively to “help ensure this key segment of our community has all the tools they need to thrive.”
4, UCSF’s Golden Compass program at SF General Hospital will receive $750,000 in funding over 3 years. Dr. Meredith Greene, Golden Compass Associate Medical Director, wrote to me that “the funding will be used to expand existing services. We will be rolling out more comprehensive screenings for cardiopulmonary disease to older adults, expand the reach of our geriatric screenings along with particular attention to addressing falls, and expand mental health and substance abuse screenings. We will also be able to hire additional staff to help with the implementation of the project. Gilead funding will also strengthen our link to our community partners and co-applicant, PRC, a San Francisco agency that specializes in providing social services and legal assistance to people living with HIV/AIDS, substance abuse or mental health issues.”
I asked Brian Bassinger, long-term survivor and the founder and Executive Director of Q Foundation, a San Francisco housing organization that prevents homelessness in the LGBTQ and HIV communities, for his thoughts on the Gilead initiative. He replied, “Gilead is making smart and strategic investments in the health and well-being of the community. But there is room to do more. I hope in the future they will also include separate funding for housing for aging people with HIV/AIDS.”
Gilead’s initiative is as broad as it is thoughtful. The seeding of new national institutions and programs along with deep investments in much needed services gives me hope in the development of a robust infrastructure of resources capable of effectively responding to the ever changing and evolving needs of an aging community. That level of impact could be possible, given that the Gilead initiative is such a big, bold step.
Dr. Marcy Adelman, Co-founder of the nonprofit Openhouse, oversees the Aging in Community column. She is a psychologist and LGBTQI longevity advocate and policy advisor. She serves on the California Commission on Aging, the Board of the Alzheimer’s Association of Northern California and Northern Nevada and the San Francisco Dignity Fund Oversight and Advisory Committee.
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