S.A. aims to tackle spread of HIV
SAN ANTONIO — Steven Finees Flores lay in a hospital bed, a feeding tube taped to his nose. He wore a patterned green gown and his face was thin, drawn. Lesions peppered his chin.
He spoke in halting sentences, his speech garbled by the large tumor on the roof of his mouth.
After two days of chemotherapy, he said, it finally was getting smaller.
“I may not look thrilled — I’m really jumping up and down,” Flores told the camera trained on his face. “But I’m excited to see what tomorrow brings.”
The 51-year-old was being treated for Kaposi’s sarcoma, a type of cancer that develops in people with AIDS. Flores knew he had HIV, but what he hadn’t grasped, until he was in the hospital, was that it had progressed to AIDS — and it almost had killed him.
Last year, Flores was among 338 people newly diagnosed with HIV in Bexar County — one of several dozen hot sports that account for the majority of new diagnoses, according to a federal plan to drastically cut HIV rates. In San Antonio, the disease largely is surfacing
among younger LGBTQ people, particularly Hispanic and African American men.
Health officials and AIDS organizations in San Antonio have mobilized over the past two years to reduce the spread of HIV by emphasizing testing and treatment and addressing gaps in a patchwork system. While the rate here has plateaued in recent years, it still surpasses state and national averages — even as the virus’s spread has declined in places such as New York and San Francisco that once were epicenters of the disease.
Still, some, like Flores, seem to slip through the cracks. In the absence of a robust immune system, tumors blossomed in Flores’ stomach, intestines and colon. Unable to properly absorb nutrients, his body grew increasingly frail even as he took HIV medications.
His ordeal serves as a stark example of the disease’s continued hold on San Antonio and as a reminder of the epidemic’s urgency, experts say.
“Nobody should get sick from HIV anymore. Not in 2019. It’s not necessary,” said Dr. Barbara Taylor, an infectious disease specialist with UT Health San Antonio who has studied HIV for years. “And when that happens, I feel like we as a health community have failed the people we are trying to serve.”
A work in progress
When the End Stigma End HIV Alliance was formed in 2017, the high number of new HIV cases in San Antonio was gaining widespread attention. Two years earlier, the Centers for Disease Control and Prevention, with assistance from state and local health agencies, had identified Bexar County as having the state’s largest group of related HIV cases.
The virus had spread rapidly among 34 people, the majority of whom were young, Hispanic men who had sex with other men.
One problem the study found was that some of the people had visited emergency rooms with symptoms of HIV, only to be mistakenly tested for the flu. And after they were diagnosed, the median time for them to be connected with treatment was more than a month.
Almost two years later, there is much to celebrate.
A long-awaited needle exchange program finally has gotten underway, and Metropolitan Methodist Hospital and University Health System have committed to screening many emergency-room patients for HIV.
In other areas, progress has been more uneven.
Just 63 percent of African American patients were in regular treatment, while only 68 percent of people ages 13 to 24 were in treatment, below goals of medical experts
The conversation turned to a new program at Bexar County Jail that aims to connect people who are identified as HIV-positive while in custody with treatment upon their release. During the first four months of the year, four of seven patients attended at least one medical appointment. But from May to August, none of the six diagnosed patients made it in.
“It’s not that we’re calling this a failure,” Sean Greene, a policy manager with Metro Health, told the group. “When we talked about undertaking this effort, we talked about the many barriers that confront this population.”
A life-changing diagnosis
Jacundo Ramos never even considered the possibility of getting HIV.
Growing up in the small town of Muleshoe, about an hour’s drive from Lubbock, he preferred to play with makeup and his sister’s dolls, behaviors that infuriated his stepfather.
He tried telling his mother several times that he was gay before simply posting about it on Facebook when he was 13. She did not talk to him for a month afterward and refused to pick him up from school.
By the time he was 17, Ramos said, he had been disowned by his family. He was taken in by two lesbian women and a transgender woman.
In his conversations with them, Ramos’ worldview started to broaden. But he said their advice when it came to HIV amounted to, “if you get AIDS, you’re going to die.”
There was no discussion of measures he could take to protect himself, such as pre-exposure prophylaxis, (PrEP) a preventive HIV medicine, or post-exposure prophylaxis (PEP), which can be taken after potential contact with the virus.
In August 2016, Ramos, then 21, enrolled at the University of Texas at San Antonio. At the time, he was in what he believed to be a monogamous relationship with a man who was almost a decade older.
Ramos broke it off the following January. A month later, he got a call. Shepherded into a room papered in HIV posters, he got the news: His former partner had infected him and three others.
Ramos felt shocked and alone. Here he was in a new city where he had few friends, no support system and no health insurance. He was at a loss for what to do next.
He told all this to the woman who delivered the diagnosis, who gave him her cellphone number, telling him to reach out if he needed anything.
When he called the number later, it was disconnected.
He was left to navigate a bewildering system on his own.
The whole experience felt demoralizing. The delivery of an HIV diagnosis is critical, he said, because it sets the tone for how the person will view AIDS service providers and the importance of staying in treatment.
“When you talk about bedside manner, there needs to be an extra level of care when it comes to an HIV diagnosis because it’s a life-altering disease,” Ramos said.
Ramos’ struggle to access treatment is something San Antonio HIV organizations are trying to rectify. Earlier this year, they debuted a rapid start model that seeks to get people who test positive for HIV into treatment within a week of their diagnosis.
Turning that goal into a reality has been challenging.
From April through June, it took an average of 13 days for patients to attend their first medical appointment, Metro Health data show.
After his diagnosis, Ramos became depressed.
Eventually, he threw himself into advocacy work. Ramos, now 24, plans to attend medical school. He wants to encourage health care providers to prioritize young, queer people like him.
Two sides of epidemic
A few months ago, a young man came into University Hospital with a massive stroke.
The patient, a gay African American man in his early 20s, had known he was HIV-positive for some time but never started treatment. Multiple outreach attempts by physicians and social workers had failed. An infection took hold in his brain, triggering the stroke, said Dr. Philip Ponce, who encountered the man while working a shift at the hospital that day.
The fact people still are getting so sick and dying from AIDS each year is “repugnant,” said Ponce, a UT Health San Antonio assistant professor of infectious diseases. Some of those patients might never access — or might fall out of — treatment for complicated reasons, including economic barriers and internalized fears of the virus.
As a result, there are “two very different sides of the same epidemic,” said Taylor, who works in the same department as Ponce: There are so many ways to prevent and treat HIV, yet the virus still is taking its toll.
Accessing treatment can be tough in Texas, where it can be difficult to find LGBTQ-friendly providers and where so many lack health insurance, Ponce said.
Even though the number of places in San Antonio where PrEP is available has more than tripled in the past two years, Ponce said, its supply still frequently is limited to those with insurance.
Earlier this year, the federal government released its plan to cut HIV transmissions 90 percent by 2030 by pouring resources into areas where rates remain high.
Under the plan, San Antonio could see additional funding, as much as $2 million annually for five years, said Dr. Roberto Villarreal, senior vice president of research for UHS.
Some money has begun to trickle in. In early October, the county was awarded around $80,000 to kick off local planning efforts.
In Ponce’s view, the government’s goals, while laudable, can be reached only with adequate resources.
Ponce, who also treats patients at the San Antonio AIDS Foundation, has been impressed by the recent progress that has been made in San Antonio.
He wishes change were happening faster, but he’s come to expect this work to be an uphill battle.
Adapting to changes
With advances in treatment, the role of local AIDS organizations has changed, too.
Historically, SAAF had primarily served as a hospice unit for AIDS patients to spend their final days. By its 30-year anniversary in 2016, the unit had become a relic of the past. People were no longer dying of AIDS in droves. Modern medicine had turned HIV into a manageable chronic illness.
What the community needed were services around prevention, testing and treatment, not a place to die.
SAAF ultimately shuttered the nursing unit. In 2017, it opened an outpatient clinic with a full suite of services — an on-site pharmacy, appointments with two doctors from UT Health San Antonio, case management, mental health counseling and referrals for dental care.
The clinic, which now serves around 275 patients, is seeing a growing number of clients from outside Bexar County, said Cynthia Nelson, who became SAAF’s CEO in late 2015 and oversaw the organization’s realignment.
Some, she said, probably do not want to seek services in their own communities, fearful that others will find out.
After leaving the hospital in March, Flores became a regular fixture at SAAF.
In early September, he visited the organization’s cafeteria and pharmacy before turning toward the office of his mental health counselor. For the past few months, he had been coming in every other week, confronting his feelings in a substantive way for the first time.
There was plenty to work on. He previously had been married to a woman who knew he was gay. They had met at a church that preached members such as Flores should hate their homosexuality, a message he’d taken to heart. Together, they had built a family, believing their shared faith was all that mattered.
Inevitably, the marriage fell apart. After their divorce, he spiraled, meeting men on apps for sex and to use meth together. Flores believes he acquired HIV through intravenous drug use.
His hospitalization propelled Flores to overhaul his life. He began attending the alliance meetings and peer support groups for HIV-positive people who struggled with substance abuse.
He returned to his infectious disease specialist to explain he hadn’t understood Kaposi’s sarcoma was a marker of AIDS, meaning he had progressed beyond HIV.
He’d needed a clearer explanation of what was happening to him. Flores also asked why he hadn’t been referred to resources such as SAAF, which became a lifeline for him during his recovery.
For Flores, now 52, his illness has given him “a whole new fresh outlook and love, respect for life.”
He could have died. But maybe he survived for a reason.