This story was part of an ambitious series The Chronicle did on people living with HIV in the city.
Her daughter was 4 years old when Vicky Blake learned she’d contracted HIV, the virus that causes AIDS. It was 1994, before the advent of antiretroviral drugs that could help arrest the virus, and Blake feared she would not live to see Curtisha turn 10.
The grim medical prognosis was compounded by the fact that everything else in Blake’s life was crumbling. She was in a physically and emotionally abusive relationship, and had lost her job in a family-run care center for the developmentally disabled after disclosing her HIV status. She had also seen four siblings die, one from a gunshot to the head, and five cousins contract the virus.
Blake sought comfort in drugs and alcohol. Even after antiretroviral drugs were developed in 1995, offering a chance to keep her HIV in check, she couldn’t muster the will to take the pills. “I lost my life skills, and everything went down,” she said while tidying her crowded Mission District apartment recently. “Some days I would call my doctor and say, ‘I have six quarts of beer in front of me, and I’ve smoked $50 worth of crack. I need help.’”
Like many people with HIV, particularly women, Blake doesn’t suffer just from the physiological ravages of the virus, but also the psychological impacts of trauma. Sexually abused throughout her youth, becoming HIV-positive was just one more blow in an already turbulent life. It was a symptom of struggle.
Blake found help in UCSF’s Women’s HIV Program. Its director, Dr. Edward Machtinger, says it’s the only HIV clinic in the country officially practicing trauma-informed care, meaning it not only treats people’s HIV, but also tackles their pervasive mental health and social issues — which make it more difficult to adhere to antiretroviral therapy and survive.
“The majority of people with HIV have been exposed to a lifelong history of toxic stress,” said Machtinger, who’s also Blake’s physician. “A diagnosis is often just another trauma in their lives.”
On a typical day, patients trickle into the clinic to meet with therapists, gynecologists, social workers, pharmacists and doctors, offering assistance with everything from drug addiction to finding housing. Hot breakfast is regularly laid out on a conference table.
The program’s innovative approach has been praised for getting high-risk individuals on antiretroviral medication. More than 8 out of 10 women in the clinic have effectively suppressed their viral loads, meaning the amount of HIV in the bloodstream is very low or undetectable. That rate is far higher than the national average of 30 percent, and betters the 70 percent suppression rate at Ryan White clinics, which treat low-income, uninsured, and under-insured people with HIV (UCSF’s program is part of the Ryan White network).
Beneath the encouraging surface-level stats, though, fissures appear. Despite the many services offered, half of the clinic’s patients report being depressed. Forty percent actively use hard drugs, most don’t feel safe disclosing their HIV status, making it hard to form supportive relationships, and almost none work, according Machtinger.
For many, simple survival is a struggle.
Of the 10 women in UCSF’s program that most recently passed away, three died of drug addiction, three committed suicide, two were murdered, and one died of pancreatic cancer. Just one, a 22-year-old woman born HIV-positive, stopped antiretroviral therapy due to “hopelessness” and died from an opportunistic infection.
Over the past decade, only 16 percent of casualties at the clinic were directly caused by HIV-related ailments.
The high rate of preventable deaths is one indication that many people with HIV, particularly biological and transgender women, do not live healthy lives. Many experts say that addressing patients’ overall well being, not just their viral loads, is key to eliminating the virus, which the city of San Francisco wants to do by 2030.
“Trauma is what’s killing women with HIV — through suicide, drug overdose, lung disease from smoking crack — and we’re not doing enough about it,” Machtinger said. “Certain sub-populations are facing massive health and social challenges that are going unaddressed by simply feeding them HIV pills.”
‘Not doing enough’
Living and dying with HIV has changed dramatically over the years, particularly in San Francisco. In 1992, at the height of the AIDS epidemic, the disease killed an average of 137 people each month in the city, many of them succumbing to opportunistic infections caused by the virus itself. Just 139 San Franciscans with AIDS died in 2014, according to preliminary data from the city’s Department of Public Health.
“The story of HIV is one of the greatest successes in modern medicine,” said Diane Havlir, who heads the HIV/AIDS Division at San Francisco General Hospital. “We went from a uniformly fatal disease to a treatable one.”
While medication can keep HIV in check and prevent its spread, disparities in care still exist. Between 2001 and 2014, 85 percent of men diagnosed with AIDS in San Francisco lived five years, compared with roughly 78 percent of transgender and biological women, according to the Department of Public Health.
Fewer than half of the HIV-positive women in the city were keeping the virus under control within 12 months in 2013, far less than the two-thirds of HIV-positive men.
African American women, like Blake, have especially high odds of both contracting HIV and dying from it. While the virus still mostly affects gay men in San Francisco, about 40 percent of women in the city living with HIV last year were black. Between 2002 and 2012, the mortality rate for African American women was more than nine times higher than it was for white women: 47 deaths per 100,000 residents, compared with 5 deaths per 100,000 residents.
“The epidemic among women is very different than the epidemic among men. It’s mostly poor women, black and brown folks,” said Naina Khanna, executive director of Positive Women’s Network-USA, which has its headquarters in Oakland. “The needs are really different than the constituency of mostly gay, white men in the Castro that have been impacted by HIV for decades.”
Medical experts attribute the disparities largely to trauma — physical, emotional and structural. More than half of women living with HIV have been physically attacked by their partners, nearly two-thirds report physical or sexual abuse, and 30 percent show signs of recent post-traumatic stress disorder, according to researchers at UCSF and other institutions.
“Those statistics don’t even account for the trauma of being black, or the trauma of being a woman, or being trans,” Khanna said. “The kind of violence people experience on the streets, in the community, anywhere.”
All of those factors can lead to depression, drug addiction, chronic unemployment and homelessness, which can overwhelm patients’ efforts to manage the life-threatening virus.
“HIV is easy to deal with if someone can take their meds every single day,” said Royce Lin, a Department of Public Health physician working at the Asian & Pacific Islander Wellness Center, a health center with HIV specialty clinics serving the Tenderloin and transgender women of color. “It’s so much harder for someone who is homeless, is using as a way of coping, is engaging in sex work as a means of survival, and has no hope.”
Johanna Brown moved to San Francisco from Concord in 2011, more than two decades after contracting HIV and one year after beginning the transition from being a man to a woman. She was searching for a more accepting community — a place where she could be her authentic self. While she found it in the city, Brown also struggled to get a foothold in her increasingly expensive new home.
For years, she shuttled between homeless shelters and residential hotels in the Tenderloin. The little money she earned was spent largely on crystal meth, and her health fell by the wayside. “I didn’t care about taking my medication, I wasn’t worried about my T-cell count or viral loads,” she said. “I was busy looking for housing, looking for food, looking for something to wear.”
Some nights, Brown would sit in a hotel room, high on uppers, and contemplate ending her life. “I felt like giving up,” she said. “I felt like suicide.”
Brown wound up in Lin’s care in 2014. He took her hands and told her everything would be OK. Lin got Brown on antiretroviral medication and ensured that she had proper hormone treatment, while caseworkers helped her find a job and a more stable place to live.
Like UCSF’s Women’s HIV Program, the Tenderloin clinic treats the virus as a byproduct of trauma, offering services — both medical and social — designed for transgender women. (The program was created in partnership with the city’s Department of Public Health.)
While data collection and analysis is sparse, some studies have found that as many as 30 percent of transgender women in the United States are HIV positive. They are much less likely to keep the virus controlled and are more often in the dark about their HIV status.
“More than any group I know, trans people face stigma and intense pressure from the moment they walk out the door,” Lin said. “HIV is not just a disease, it’s also a symptom of something deeper and oftentimes broken in people’s lives. ... Existing systems may not be sufficient to meet some clients’ really intense psychosocial and medical needs.”
For Jones, the unique services provided at the clinic — and the family she has found within its walls — may have saved her life. “I’ve been in suicide mode many times, but the minute I walk into the clinic’s door, that depression disappears,” she said.
While certain populations remain disproportionately affected by HIV, San Francisco has made huge strides in its fight against the epidemic. City residents with HIV are much more often linked to care than the national average, two times more likely to achieve viral suppression, and have much higher survival rates when HIV progresses to AIDS, according to the Department of Public Health’s most recent data.
Despite the steady progress combatting HIV, San Francisco has more ambitious goals. Mayor Ed Lee recently pumped $1.7 million into the city’s Getting to Zero campaign, which seeks to cut new HIV infections and HIV-related deaths 90 percent by 2020, and to eliminate stigma from the disease.
“We have played defense for many, many years trying to keep people alive, trying to get people healthy,” Supervisor Scott Wiener said at an October press conference about the campaign. “And now, we’re going to play offense.”
The campaign’s first two objectives have measurable benchmarks. To dramatically reduce HIV-related deaths, the city plans to quickly funnel patients into treatment and keep them there. To curb the spread of the virus, health care facilities will expand access to pre-exposure prophylaxis, or PreP, which can prevent people from contracting the virus.
The third component — ending stigma — is more difficult to measure and harder to achieve. Stigma can take many forms, from blatant discrimination, such as firing an employee for disclosing their HIV status, to more subtle biases, such as not prescribing antiretroviral medication to a homeless patient out of fear that they won’t be able to stay on top of treatment.
Much like trauma, stigma’s effects often spark depression and feelings of isolation, which can cause patients to avoid testing and treatment, and lead to risky behavior.
Reducing it could be the key to ending HIV. “In order to tackle the epidemic you have to tackle stigma,” said Wayne Steward, co-chairman of the Getting to Zero committee and an associate professor at UCSF. “Otherwise, you’re not going to get to the underlying conditions that propagate the spread of the disease.”
While the city doesn’t have a concrete plan for tackling HIV’s stigma, Steward says, success will hinge on fighting a variety of social ills that play a role in the spread of the virus such as racism, homophobia, transphobia, poverty, unequal access to health care and drug abuse.
“From the very beginning of the epidemic, people's reactions to HIV have been shaped in part by their impressions of the communities that are heavily affected by it,” Steward said. “So you can’t address HIV’s stigma without looking at other stigmas affecting gay men, injection drug users, women of color, transgender people.”
‘I can do this’
After Vicky Blake landed at UCSF’s Women’s HIV Program in 2000, she continued to ignore her treatment. She kept smoking crack cocaine and drinking excessively while her HIV medication gathered dust in the corner of her apartment.
“It took a year to come down off all of the drugs and all of the pain meds,” she said. “I had to graduate mentally.”
At the behest of Machtinger, Blake joined a support group at Women Organized to Respond to Life-Threatening Disease, an Oakland nonprofit organization. At her first meeting in 2005, there were about 20 women in the room, all of them HIV-positive. It was the only time Blake had met anyone else enduring a similar struggle.
“I saw a 70-year-old woman living with HIV and thought, ‘I can do this, I got this,’” she said, holding back tears. “That was the first time I knew I wasn’t alone, and that I had a chance to live.”
It has been more than a decade since Blake first attended the group. Her viral load is now undetectable, and she’s trying to get a medical marijuana business off the ground: Ms. Vicky’s Sibannac delights.
Every Wednesday, Blake makes the trek to the Oakland meet-up, not to receive support herself, but to offer it to others — specifically, women who have recently contracted the virus.
“When a newly diagnosed person comes in the room, I want them to see me and say, ‘I’d like to be like Ms. Vicky,’” she said. “I tell them you need to love yourself. You have HIV, but HIV don’t have you.”