HIV Is Treatable, but Homelessness Can Make It Fatal
By Vivian Lam, Vice News
Originally published Feb. 8, 2023 in Vice News. Click here to view the original article.
In an alley near the heart of San Francisco’s Tenderloin district, a small community of tents lines the sidewalks. For several blocks, personal possessions spill onto the road as people mill in the street, pushing carts and sifting through bags.
Across the alley sits the San Francisco Community Health Center, which serves people who are HIV positive and experiencing homelessness, among others. Josh Laurel, the program manager for HIV services, gestures to the alleyway, shading his eyes from the glare of the late afternoon sun. This is where the center sees some of its clients, he explains, stepping aside as a person huddled beneath a blanket shuffles past. “If we can’t find them, we’ll yell out their names or ask if anyone in the community in that alley has seen them. Then we would literally go to wherever they are.”
Finding and getting to clients can be challenging, and not only because there isn’t a good way to directly contact people who don’t have consistent phone or computer access. The Tenderloin has one of the highest rates of poverty and substance abuse in the city. Willow Street, like other areas throughout San Francisco, is subject to frequent “sweeps” by the city: People are forced to relocate without guaranteed shelter, or moved into shelters where they may face violence or reencounter drugs that trigger a relapse. Their belongings are often taken away and discarded, sometimes including their medications and identity documents.
For decades, San Francisco has served as a model for how to treat HIV. But as the city’s housing crisis intensifies and its homeless population grows, this treatable disease can be fatal among some of the city’s most vulnerable residents.
“I was pretty much dying,” said Mark, a current participant of the program. Though he was on HIV medication when he became a client in 2022, he was living in Golden Gate Park and found it difficult to keep up with the treatment regimen. Most HIV medications involve taking daily pills that are prone to being stolen and can be hard to integrate into unstable living conditions. While monthly long-acting injectables are now available, many have not yet made the switch or are medically ineligible. San Francisco’s homeless outreach team brought Mark to HIV Homeless Outreach and Mobile Engagement (HHOME), where he met Dr. Deborah Borne, one of the founders of the program. “She saved my life. She noticed I was going into liver failure, and she literally saved my life.”
HHOME was created in 2012 to address the disproportionate burden of HIV among unhoused individuals. A related program, GTZ, or Getting to Zero Intensive Case Management, was founded in 2017 to also meet the city’s ambitious HIV reduction goals. With a history deeply marked by the AIDS epidemic, San Francisco has long made the control and elimination of HIV one of its priorities. It opened the world’s first AIDS clinic and ward in 1983, pioneering the San Francisco Model that became the “gold standard” for holistic and compassionate HIV care. The city launched its Getting to Zero campaign in 2014, with the aim of becoming the first city to reach no new HIV infections, deaths, and stigma. It houses a number of nonprofits that have supported locals living with AIDS since the very start of the epidemic. A 2021 survey by the city’s department of public health found higher awareness of HIV status and use of the HIV prevention drug PrEP compared to the rest of California and the country.
But in 2021, people experiencing homelessness accounted for 24% of new HIV diagnoses in San Francisco. Only 66% were virally suppressed, compared to 91% of housed individuals, and those who were experiencing homelessness at time of diagnosis were more likely to be cis or trans women, Black, or people who inject drugs.
HHOME is designed to catch people who fall through the care gaps. It explicitly seeks out the populations that are most difficult to provide care for: Clients must be living on the streets or unstably housed, have identified psychiatric conditions and active substance abuse, and have untreated and uncontrolled HIV. And every member of the care team—which includes physicians, nurses, and social workers, among others—is mobile, regularly going directly to clients in the community.
“I made it a point to go daily to the hospital while they were there to show them that we do care, and that we’re here,” said Guadalupe Padilla, a GTZ/HHOME program supervisor, recalling her experience with a client who is currently undetectable and temporarily housed. “I was able to bridge that gap and build that trust by showing up every day and having those conversations with them.”
These conversations often center around what matters most to the client—what they went through on the streets, how they feel about their diagnosis, or whatever they want to get off their chest. “I’ve had so many clients tell me that they feel unworthy because of the way they live, where they live, or whatever it is they were doing at that time in their lives,” Padilla said. “We want them to know that whatever they’re going through, it’s O.K.”
HHOME doesn’t follow a traditional linear HIV treatment path of diagnosis, treatment, and viral suppression. Instead, it accommodates the reality that people experiencing homelessness may be able to decrease the amount of HIV in their body to very low levels, but may lose viral suppression because they lose access to care. Mark was once undetectable, but his viral load went back up after he lost his housing and couldn’t access his medication. “It’s a livable disease, but I still gotta take pills every day for the rest of my life,” he said, noting that the stigma of the disease has also affected how others interact with him. “For the last 20 years, my whole life has focused on [HIV].”
A common refrain among clients and staff is that they “meet people where they’re at”—not only by traveling to wherever clients are, but also by letting them take the helm on their own care. This sentiment is echoed by Dr. Elizabeth Imbert, clinical lead of San Francisco General Hospital’s POP-UP clinic at Ward 86. “The history of HIV is really a history of activism and listening to patients,” said Imbert. “The first thing we’re asking is ‘what would you like us to help you with?’”
“Because we have this small team, we get to know people and try to think really systematically about what’s driving this poor health outcome, what’s causing things to not work, what’s the inner strength of this person we can celebrate, and where we can assist,” said Imbert. She explains that treating someone’s HIV may require treating their opioid use and mental health disorders first, and treating those requires identifying support systems and stable housing.
All of this requires building trust. Sometimes, Imbert noted, all it takes to get someone to re-engage is reaching out in person. “People really appreciate us coming to them and saying, ‘Hey, we haven’t seen you. We’re worried about you. Want to check in with us?’” said Imbert.
For Martina Travis, who was HHOME’s first client in 2012, this direct outreach was vital. “They picked me up when I couldn’t pick myself up,” said Travis, who moved to San Francisco in the late 90s and found the cost of living so high that she paid to couch surf through sexual favors and moved from one SRO to the next. When HHOME found her, her health had deteriorated to the point that she required daily assistance to keep herself alive. “If it wasn’t for this agency, I probably wouldn’t be talking to you today.”
Through their experience with Martina, program staff leaned into more intense outreach. They are present when patients take their medication, and bring providers directly to those who are uncomfortable with four-wall clinics. It’s a labor-intensive, wraparound approach to care. “I’ve never seen so many people care for one person in my life,” Martina recalled.
Martina now serves as a case manager at HHOME, where many of her clients are friends she made on the streets. She’s found it challenging to see them go through what she went through herself. “Watching them struggle and go downhill… It grabs you by the heart and you don’t ever want to let go,” she said. “I intentionally walk through the crowd when I’m coming to work so not only may I run into one of my clients but I can also see where I’ve been before, knowing that I don’t want to go back there.”
The center has made it a point to bring former clients into the fold. Informal “ambassadors” who know where to find people bring friends in need of care to a place they can trust. Mark noted that he’s brought people to the center because they, like many others on the streets, didn’t know where to get help.
Cesar is a former client now employed by the center. He first hit the streets when he was 12, because his father beat him until he couldn’t stay with his family any longer. When he first came to the program, he didn’t qualify for benefits because he was undocumented and didn’t have any form of identification. Though he was able to get permanent housing after getting connected with lawyers, he asked the center for a job because he didn’t want to risk relapsing from exposure to the streets. He now works there as a cook, providing meals to hundreds of clients each day.
For GTZ/HHOME, building back someone’s independence involves more than just addressing their health and legal needs—it also requires solidarity and fellowship.
Many clients visit the center daily for Cesar’s hot meals and access to computers, art supplies, and a friendly face. Within the center are drop-in spaces that are bright, open, and clean. Around the block is a café that serves as a safe space for trans people to access basic resources and a place to rest. “I think that’s what brings them to us, because we provide them a community that they most of the time don’t have outside—we make them feel like family,” Josh Laurel said.
Though the center may take an “everyone deserves multiple chances in life” approach to their work, as Laurel described it, the city doesn’t when it comes to housing. Not only are the constantly changing systems and policies difficult to navigate, but navigation centers and access points can close or shut down without warning. Documentation requirements can further stymie efforts, when clients are unable to get a new social security card after losing it multiple times over the course of being unhoused. “The housing is just not there,” said Laurel. “There’s not much support from the city, even with HIV folks.”
The San Francisco Department of Public Health stated in an email that the city is “deeply committed” to reaching its goal of getting to zero, citing the development of programs that seek to address HIV disparities by partnering with community-based organizations and large health systems to directly provide and link individuals experiencing homelessness to health care, food, and housing services. It also noted that the department had budgeted over $42 million to fund HIV health care programs. The San Francisco Department of Homelessness and Supportive Housing did not immediately respond to requests for comment on how the city is addressing affordable housing, or how “sweeps” serve its goals regarding HIV.
Transitional programs like GTZ/HHOME and POP-UP aren’t cure-alls. Their teams are small, and can only take on so many clients. The work is rewarding, but can be physically, emotionally, and spiritually taxing. Clients may go missing, deteriorate, or die. Funding is short.
And the services these programs provide are reserved only for people with HIV. In 2021, there were around 555 people with HIV experiencing homelessness in San Francisco. In 2022, there were over 7,750 people experiencing homelessness overall. It’s unclear how many of these people may currently have or will contract HIV in the future.
“There has to be a top-down approach,” said Laurel. “There have to be policies in place and resources and infrastructure to fully support an individual. Because right now, all we’re doing is putting a band-aid on a big wound. It’s gonna swell up again, and it’s gonna bleed again.”
When HHOME clients and others talk about how they became homeless, they often recall domestic violence, substance abuse, divorce, job loss, disability, poverty, and trauma. People become homeless for a complex web of reasons that, in many cases, cannot be easily disentangled into a single cause. But focusing on the individual ignores the fact that homelessness in cities like San Francisco is not driven by a concentration of these factors, but because rent prices are insupportably high and vacancy rates are abysmally low. And the policymakers and voters of these economically thriving cities, while typically agreeing that affordable housing and homelessness are key issues to resolve, will also push for policies and laws that block development—even though new units will drive down costs for everyone, both in terms of housing and in addressing homelessness.
“The solution to homelessness is affordable housing,” said Imbert. “We’re in a situation where we know how to improve HIV outcomes, and at the same time we don’t have enough housing right now.”
In the meantime, the city has implemented two contradictory stop-gap measures. One is to “sweep” or “resolve” homelessness by physically brushing people aside to temporarily hide the blight of societal failure. The other is to seek those swept to the margins, understand their needs, and do whatever it takes to get them back to independence and stability.
Imbert and the staff and clients of GTZ/HHOME believe getting to zero is possible. But until affordable housing becomes more than a talking point, and the stigma of HIV loses its bite, they plan to keep seeing their patients and clients in the clinic and out in the streets.
Cesar, the cook, says he’s in a better place now. He loves and respects himself, and wants to keep himself alive. He gestured over his body—no longer emaciated, no longer in pain. “I have my room, my TV, my bed—I don’t want no more. I’m O.K. where I am,” he said, pressing his hand over his chest. “I’m the richest man in the world.”