Charlotte, North Carolina – Four months after asking for asylum in the US, Fernando Hermida started coughing and feeling tired. He thought it was a cold. Then wounds appeared in his groin and he was soaking the bed in sweat. He took a test.
On New Year’s Day 2022, at age 31, Hermida learned that she had HIV.
“I thought I was going to die,” he said. He struggled to navigate a complicated new healthcare system. Hermida, who speaks only Spanish, didn’t know who to turn to.
At that time, the U.S. Department of Health and Human Services was about three years into a federal initiative to end the nation HIV epidemic, pumping hundreds of millions of dollars annually into certain U.S. states, counties and territories with the highest infection rates. The objective was to reach the estimated value 1.2 million people living with HIV, including some who do not know they have the disease.
Overall, estimated rates of new HIV infections declined by 23% between 2012 and 2022. But an analysis by KFF Health News-Associated Press found that the rate did not fall as much for Latinos as it did for other racial and ethnic groups.
Although African Americans continue to have the highest HIV rates in the United States overall, Latinos accounted for the majority of new HIV diagnoses and infections among gay and bisexual men in 2021, compared to 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 that Latinos are experiencing a disproportionate number of new infections and diagnoses in the U.S., with diagnosis rates highest in the Southeast.
“HIV disparities are not inevitable,” said Dr. Robyn Neblett Fanfair, director of the CDC’s Division of HIV Prevention, 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 are not enough.
“Our invisibility is no longer tolerable,” said Vincent Guilamo-Ramos, co-president of the Presidential Advisory Council on HIV/AIDS.
Hermida, who was born in Venezuela, suspects she contracted the virus while in an open relationship with a partner before coming to the US. He ended up moving to Charlotte, North Carolina, to be closer to family and with hopes of receiving more consistent healthcare.
He enrolled in a clinic that receives funding from the Ryan White HIV/AIDS Program, a federal safety net plan that serves more than half of the people diagnosed with HIV in the country, regardless of their citizenship status. But over time, communication with the clinic became less frequent, he said, and he didn’t get regular interpretation help during appointments with his English-speaking doctor. A representative for Amity Medical Group confirmed that Hermida was a client but did not respond to questions about his experience.
His eligibility for the Ryan White program expired in September 2023, and he signed up for a health plan through the Affordable Care Act marketplace, but did not realize that the insurer required him to pay for a portion of his HIV treatment.
In January, the Lyft driver received a bill for $1,275 for his antiretroviral medication. He paid the bill with a coupon he found online. In April, he received a second bill that he was unable to pay. For two weeks, he stopped taking the medication that keeps the virus undetectable and untransmittable.
“Estoy que collapsing,” he said. I’m falling apart. “I have to live to pay for the medication.” I have to live to pay for my medicine.
One way to prevent HIV is pre-exposure prophylaxis or PrEPwhich is taken regularly to reduce the risk of contracting HIV through sex or intravenous drug use. Approved by the federal government in 2012, acceptance was not uniform 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 shows 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 almost US$30 billion Of the federal money allocated to HIV health services, treatment and prevention in 2022, only 4% went to prevention, according to a KFF analysis.
Furthermore, Congress appropriated US$2.3 billion More than five years until the End the HIV Epidemic initiative, which gives money to cities, counties and states, but the initiative lacks requirements to target any specific group — including Latinos. However, in 34 of the 57 areas receiving the money, cases are going in the wrong direction: Diagnosis rates among Latinos increased from 2019 to 2022, while they declined for other racial and ethnic groups, the KFF Health analysis found. News-AP.
Hermida’s fiancé, who is taking PrEP, suggested seeking care in Orlando, Florida, where he has family and friends. Hermida registered with a nonprofit primary care clinic dedicated to supporting Latinos living with HIV.
“Ultimately, if the organization is not led by and for people of color, then we are just an afterthought,” he said. Andrés Acosta Ardiladirector of community outreach at Pineapple Healthcare who was diagnosed with HIV in 2013.
Hermida now receives her HIV medication for free because Pineapple Healthcare is part of a federal drug discount program. It is also, in many ways, an oasis. The new diagnosis rate for Latinos in Orange County, Florida, which includes Orlando, rose by about a third between 2012 and 2022, while it fell by a third for others.
Hermida, whose asylum case is pending, is hopeful that her search for consistent treatment for HIV – which has defined her life for the past two years – can finally come to an end.
“I am a nomad by force, but well, as I say to my partner and my family, I have to be where I am with good medical services,” he said. I’m forced to be a nomad, but as my family and fiancé say, I need to be where I can get good medical services.
That’s the priority, he said. “That’s the priority now.”
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Bose reported from Orlando, Florida. Reese reported from Sacramento, California. AP video journalist 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. AP is responsible for all content. This article was also produced by KFF Health Newsa national newsroom that produces in-depth journalism on health issues and is one of the main operational programs of the KFF — the independent source of research, polls and journalism on health policy. KFF Health News is the publisher of California Health Linean editorially independent service from California Health Care Foundation.
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