Older Americans With HIV: A Conversation with San Francisco Supervisor Jeff Sheehy
About a quarter of the estimated 1.2 million people living with HIV in the United States are 55 years of age or older. While many have been living with HIV for years, some have acquired their infections more recently—about 1 in 6 new HIV diagnoses that occur each year in the U.S. are in people over 50. To coincide with this year’s National HIV/AIDS and Aging Awareness Day, amfAR spoke with Jeff Sheehy, the Supervisor for District 8 in San Francisco since January 2017. A veteran public servant and long-time HIV/AIDS activist and pioneer for LGBT equality, Mr. Sheehy is the first person openly living with HIV to serve on the Board of Supervisors. He is also a founding member of San Francisco's Getting to Zero Consortium and the Industry Collaboration Group of the International AIDS Society’s Towards an HIV Cure project.
amfAR: What do you see as the most pressing current issues in addressing HIV/AIDS among older Americans?
Jeff Sheehy: People of all ages with HIV, especially in urban areas, are having trouble finding and staying in affordable housing, and some are homeless. People who have been treated successfully have managed to achieve some sort of stability, but it’s fragile. If that is disrupted by loss of housing, then it is much harder to maintain their health.
Jeff Sheehy, Supervisor of District 8,
San Francisco Board of SupervisorsMental health needs are enormous. Social isolation is a serious problem for older people with HIV, and successful programs for older people with HIV have a significant social component. PTSD affects the whole community impacted by AIDS since the ’80s and the ’90s, including those who are HIV negative, and including caregivers. And we still lose people to AIDS and AIDS-related morbidities.
Tailoring healthcare for people with HIV as they age is a significant concern. The current drugs don’t have nearly the negative impact on people’s health that the original ones did, but people who started treatment in the early days are still feeling their effects. They caused peripheral neuropathy and had huge metabolic impacts. Across a range of aging-related morbidities, including cardiovascular disease and non-HIV-related cancers, people with HIV either get them sooner or experience them more acutely. This requires a more sophisticated level of caregiving.
The impact of trauma is a huge under-realized issue that is extremely acute in marginalized populations with HIV. A wonderful doctor in the Women’s HIV Program at UCSF, Edward Machtinger, told me a few years ago that of the last 10 patients he lost, only one was due to HIV. The rest died because of trauma-related events: murder, suicide, drug overdose, domestic violence. He said, "I had to realize that while I have succeeded in controlling their HIV, I’ve utterly failed them as their caregiver.” So he’s completely remodeled his program.
Now if you walk into his clinic, there’s a concierge who greets you and offers you something to drink and eat. That automatically changes the power dynamic between patients and the caregiving team. The whole staff is trained to engage people in a way that shows they care deeply about their health and wellbeing. You’re not just there to draw blood, check their labs, prescribe pills and get them out. I think trauma-informed primary care is a huge need not only for people with HIV as they age but for all people with HIV.
People who have been treated successfully have managed to achieve some sort of stability, but it’s fragile.amfAR: How would potential cuts to HIV research, prevention, and treatment programs impact progress against HIV/AIDS in the US?
Sheehy: We have the tools to end the epidemic, such as pre-exposure prophylaxis, but we’re not getting PrEP to many who desperately need it. We need research to identify why people don’t think they can obtain PrEP, don’t know about PrEP, or don’t stay on PrEP. We know that if you implement a robust PrEP program along with robust HIV testing, such as we’re doing with our Getting to Zero campaign in San Francisco, then you increase the uptake of PrEP. We also need to refine medications both for PrEP and for HIV treatment so they’re easier to adhere to.
We’re seeing a revolution in biomedical research, and HIV is just starting to be included in it. There is a strong signal that the recently approved CAR T Cell therapies, which involve genetically modifying people’s T cells to control cancer, could be impactful in HIV and may even play a role in the cure.
Also HIV research has always had an impact on other diseases. The Getting to Zero consortium was a model for San Francisco CAN, which is a program to attack cancers that disproportionately impact communities that suffer health disparities. HIV-informed research on antiretrovirals led to a cure for hepatitis C. And what we’re learning about how HIV affects aging will help us understand how aging affects everybody. So cutting funding would be extremely foolish.
amfAR: Can you describe the Golden Compass program at Zuckerberg San Francisco General Hospital?
Sheehy: Golden Compass is a program for people with HIV as they age at Ward 86, the first outpatient clinic for people with HIV in the country established in 1983. It looks across a range of different morbidities that are heightened in people with HIV. The program is tailored around the concept of four points; north, east, west, and south.
The impact of trauma is a huge under-realized issue that is extremely acute in marginalized populations with HIV.North is heart and mind, which focuses on cardiovascular health and both observing and ameliorating any neurological defects that occur as people age. East is bones and strength. It includes exercise and supporting bone health. Some of the early HIV drugs had negative impacts on people’s bones, and many people who took them are dealing with bone issues. West is dental, hearing, and vision. In our Ryan White Planning Council, we’ve always fought for access to dental services, which is a major need for people with HIV. Access to hearing and vision services is often a problem as well, as they aren’t covered by a lot of private health insurance plans. South is network and navigation, which helps people with needs including housing and mental health, and making sure people are engaged in activities so they can be together and not socially isolated.
amfAR: One of the goals of San Francisco's Getting to Zero Consortium is ending HIV stigma. How has HIV stigma changed since the beginning of the epidemic, and what more needs to be done to combat it?
Sheehy: AIDS was initially met with terror, disgust, and hate. At that time, no one knew what the disease was or how it was transmitted, and the huge amount of homophobia that already existed was magnified because gay men were the primary population impacted. These factors worked in tandem to make HIV stigma overwhelming. We’ve made great progress in addressing homophobia, but we still have much more to do. There’s still a lot of fear and misinformation about HIV.
As my friend Tom Coates—who is a great pioneer in HIV prevention and is also gay and HIV positive—observed many years ago, HIV exploits social inequity. Where there is injustice and disparities and marginalization, HIV seems to coagulate, whether it’s in gay men, trans folks, women, or people of color. You can’t really address HIV unless you deal with misogyny, homophobia, transphobia, racism, anti-immigrant sentiment, and, I would add, trauma.
Social justice is as important as any biomedical intervention that you develop. We see this as we roll out PrEP. People who are getting and succeeding on PrEP tend to be those who experience fewer barriers to healthcare and suffer less stigma not related to HIV but to social conditions.
amfAR: Do any of the other types of legislation that you sponsor and support intersect with your work to combat HIV?
Sheehy: When I came into office, I saw that one in five people who are homeless in San Francisco are young people; yet they were only getting seven percent of the resources for homelessness. Almost half of young people who are homeless in San Francisco are LGBTQ, and thirteen percent are HIV positive—a staggering rate. That tells us that any prevention that may be occurring is not effective.
Young people living on the streets not only have a high burden of HIV, but also high rates of HIV transmission for that age group. So driving resources towards homeless youth can have a huge impact on Getting to Zero. I view the young people on our streets as internal refugees who have left other parts of the country where they aren’t safe.
Addressing youth homelessness is one issue. Ensuring that we have more affordable housing is another; so is improving services for senior citizens. I have been actively involved in preparations should something happen to the Affordable Care Act, because that’s had a huge impact in reducing lack of insurance in San Francisco. It is essential for us to reaffirm our commitment to maintaining our social safety net.
amfAR: Are there neglected areas of research that we should be investing in or focusing on that could potentially benefit older Americans living with HIV?
Sheehy: Learning more about how HIV interacts with the brain is absolutely critical. We need to know what the reservoir looks like in the brain, what kind of activity takes place in the brain within people who are HIV positive, and the impact of various drugs. Are we going to see more neurological defects, and what are the best medications for people with HIV as they age?
Cardiovascular disease and inflammation are huge concerns in people living with HIV, and studying these comorbidities intersects with cure research. For instance, if inflammation is part of what sustains the reservoir where HIV persists, and given that long-lived cells in the brain infected with HIV are part of the reservoir and it is extremely difficult to access the central nervous system reservoir for research, we really don’t know how that will impact any potential cure.
Understanding how HIV drives non-HIV-related cancers is also important. We know that certain viral infections drive certain cancers, like HPV causes cervical and anal cancer. The fact that we’re seeing more non-HIV-related cancers in people with HIV suggests that there may be some aspect of the virus that drives the onset of these cancers in people with HIV. Research in this area may also have impacts that reach beyond HIV.