Young gay Latinos see a rising share of new HIV cases, leading to a call for targeted funding

Four months after seeking asylum in the U.S., Fernando Hermida began coughing and feeling tired. He thought it was a cold. Then sores appeared in his groin and he would soak his bed with sweat. He took a test.

On New Year’s Day 2022, at age 31, Hermida learned he had HIV.

"I thought I was going to die,” he said. He struggled to navigate a new, convoluted health care system. Hermida, who speaks only Spanish, didn’t know where to turn.

At that time, the U.S. Department of Health and Human Services was about three years into a federal initiative to end the nation’s HIV epidemic by pumping hundreds of millions of dollars annually into certain states, counties and U.S. territories with the highest infection rates. The goal was to reach the estimated 1.2 million people living with HIV, including some who don’t know they have the disease.

Overall, estimated new HIV infection rates declined 23%from 2012 to 2022. But a KFF Health News-Associated Press analysis found the rate has not fallen for Latinos as much as it has for other racial and ethnic groups.

While African Americans continue to have the highest HIV rates in the United States overall, Latinos made up the largest share of new HIV diagnoses and infections among gay and bisexual men in 2022, compared with other racial and ethnic groups. Latinos, who make up about 19% of the U.S. population, accounted for about 33% of new HIV infections, according to the Centers for Disease Control and Prevention.

The analysis found Latinos are experiencing a disproportionate number of new infections and diagnoses across the U.S., with diagnosis rates highest in the Southeast.

“HIV disparities are not inevitable,” Dr. Robyn Neblett Fanfair, director of the CDC’s Division of HIV Prevention, said in a statement. But Latino health policy advocates want the federal government to declare a public health emergency in hopes of directing more money to Latino communities, saying current efforts aren’t enough.

“Our invisibility is no longer tolerable,” said Vincent Guilamo-Ramos, co-chair of the Presidential Advisory Council on HIV/AIDS.

Hermida, who was born in Venezuela, suspects he contracted the virus while he was in an open relationship with a male partner before he came to the U.S. He eventually moved to Charlotte, North Carolina, to be closer to family and with hopes of receiving more consistent health care.

He enrolled in a clinic that receives funding from the Ryan White HIV/AIDS Program, a federal safety-net plan that serves over half of those in the country diagnosed with HIV, regardless of their citizenship status. But over time, communication with the clinic grew less frequent, he said, and he didn’t get regular interpretation help during visits with his English-speaking doctor. An Amity Medical Group representative confirmed Hermida was a client but didn’t answer questions about his experience.

His eligibility in the Ryan White program expired in September 2023, and he enrolled in a health plan through the Affordable Care Act marketplace, but didn’t realize the insurer required him to pay for a share of his HIV treatment.

In January, the Lyft driver received a $1,275 bill for his antiretroviral. He paid the bill with a coupon he found online. In April, he got a second bill he couldn’t afford. For two weeks, he stopped taking the medication that keeps the virus undetectable and intransmissible.

“Estoy que colapso,” he said. I’m falling apart. “Tengo que vivir para pagar la medicación.” I have to live to pay for my medication.

One way to prevent HIV is preexposure prophylaxis, or PrEP, which is regularly taken to reduce the risk of getting HIV through sex or intravenous drug use. Approved by the federal government in 2012, the uptake has not been even across racial and ethnic groups.

Epidemiologists say high PrEP use and consistent access to treatment are necessary to build community-level resistance but CDC data show much lower rates of PrEP coverage among Latinos than among white Americans.

Latino health policy advocates want the federal government to redistribute funding for HIV prevention, including testing and access to PrEP. Of the nearly $30 billion in federal money that went toward HIV health care services, treatment and prevention in 2022, only 4% went to prevention, according to a KFF analysis.

Also, Congress has appropriated $2.3 billion over five years to the Ending the HIV Epidemic initiative, which gives money to cities, counties and states, but the initiative lacks requirements to target any particular group — including Latinos. Yet in 34 of the 57 areas getting the money, cases are going the wrong way: Diagnosis rates among Latinos increased from 2019 to 2022 while declining for other racial and ethnic groups, the KFF Health News-AP analysis found.

Hermida’s fiancé, who is taking PrEP, suggested seeking care in Orlando, Florida, where they have family and friends. Hermida registered with a nonprofit primary care clinic dedicated to supporting Latinos living with HIV.

“At the core of it, if the organization is not led by and for people of color, then we’re just an afterthought,” said Andres Acosta Ardila, the community outreach director at Pineapple Healthcare who was diagnosed with HIV in 2013.

Hermida now gets his HIV medication at no cost because Pineapple Healthcare is part of a federal drug discount program. It’s also, in many ways, an oasis. The new diagnosis rate for Latinos in Orange County, Florida, which includes Orlando, rose by about a third from 2012 through 2022, while dropping by a third for others.

Hermida, whose asylum case is pending, is hopeful his search for consistent HIV treatment — which has defined his life the past two years — can finally come to an end.

“Soy un nómada a la fuerza, pero bueno, como me comenta mi prometido y mis familiares, yo tengo que estar donde me den buenos servicios médicos,” he said. I’m forced to be a nomad, but like my family and my fiancé say, I have to be where I can get good medical services.

That’s the priority, he said. “Esa es la prioridad ahora.”

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Bose reported from Orlando, Florida. Reese reported from Sacramento, California. AP videojournalist Laura Bargfeld contributed to this report.

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The Associated Press Health and Science Department receives support from the Robert Wood Johnson Foundation. The AP is responsible for all content. This article also was produced by KFF Health News, a national newsroom that produces in-depth journalism about health issues and is one of the core operating programs at KFF — the independent source for health policy research, polling, and journalism. KFF Health News is the publisher of California Healthline, an editorially independent service of the California Health Care Foundation.