) and Devna Bose ()
Four months after requesting asylum in the United States, Fernando Hermida began coughing and feeling tired. He thought it was a cold, but then sores appeared in his groin and he soaked the bed with sweat. Therefore, he decided to take a test.
On New Year’s Day 2022, at age 31, Hermida learned she had the human immunodeficiency virus (HIV). “I thought I was going to die,” she says. He also had to fight to navigate a new and complicated health system. Hermida, who only speaks Spanish, didn’t know where to turn.
At that time, the Department of Health had implemented a three-year federal initiative to end the country’s HIV epidemic by investing hundreds of millions of dollars annually in the states, counties and 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 it.
Overall, estimated rates of new HIV infections fell 23% from 2012 to 2022. But an analysis by and found that the rate has not fallen among Latinos as much as it has for other racial and ethnic groups. .
African Americans continue to have the highest rates in the United States, but Latinos made up the majority of new diagnoses and infections among gay and bisexual men in 2022, compared to other racial and ethnic groups.
Latinos, who represent about 19% of the population in the United States, recorded about 33% of new infections, according to the Centers for Disease Control and Prevention (CDC).
The analysis revealed that Latinos are experiencing a disproportionate number of new infections and diagnoses across the country, but the highest rates have been recorded in the Southeast.
“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 communities, and argue that current efforts are not enough.
“Our invisibility is no longer tolerable,” said Vincent Guilamo-Ramos, co-chair of the Presidential Advisory Council on HIV/AIDS.
Hermida, who is originally from Venezuela and works as a Lyft driver, suspects he contracted the virus while in an open relationship with a partner before arriving in the United States.
He eventually moved to Charlotte, North Carolina, to be closer to his family and in hopes of receiving more systematic health care. She 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 immigration status. But over time, communication with the clinic became less frequent, she said, and she did not receive regular interpretation help during visits with her English-speaking doctor.
A representative for Amity Medical Group confirmed that Hermida was a customer, but did not respond to questions about her experience.
His Ryan White eligibility expired in September 2023, and he signed up for a health plan through the Affordable Care Act (ACA), but he didn’t realize the insurer was requiring him to pay a portion of your treatment.
In January he 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 could not pay.
For two weeks he stopped taking the medication that keeps the virus undetectable and untransmittable. “I’m breaking down,” she said, “I have to live to pay for the medication.”
One way to prevent HIV is pre-exposure prophylaxis, or PrEP, which is taken regularly to reduce the risk of contracting HIV through sex or intravenous drug use.
Approved by the federal government in 2012, its adoption has not been uniform across all racial and ethnic groups. Epidemiologists say high PrEP use and consistent access to treatment are necessary to build resistance at the community level, 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 the nearly $30 billion in funding that went to HIV health care, treatment and prevention services in 2022, only 4% went to prevention, according to a KFF analysis.
Additionally, Congress has allocated $2.3 billion over five years to the Ending the HIV Epidemic initiative, which gives money to cities, counties and states, but that entity has no requirements to target any particular group, including Latinos. However, in 34 of the 57 areas receiving funding, cases are on the wrong track: Diagnosis rates among Latinos increased from 2019 to 2022, while they decreased for other racial and ethnic groups, according to the aforementioned analysis.
Hermida’s fiancé, who is taking PrEP, suggested she seek treatment in Orlando, Florida, where they have family and friends. Hermida enrolled in a nonprofit primary care clinic dedicated to supporting Latinos living with HIV.
“At the core, if the organization is not run by and for people of color, then we are just an afterthought,” said Andrés Acosta Ardila, the director of community outreach at Pineapple Healthcare, who was diagnosed with HIV in 2013.
Hermida now receives her HIV medication at no cost because Pineapple Healthcare is part of a federal drug discount program. It is also, in many ways, an oasis. The rate of new diagnoses among Latinos in Orange County, which includes Orlando, rose by about a third from 2012 to 2022, while it fell by a third for others.
Hermida, whose asylum case is ongoing, is hopeful that her search for consistent HIV treatment – which has defined her life for the past two years – can finally come to an end.
“I am a forced nomad, but well, as my fiancé and my family tell me, I have to be where they give me good medical services,” he stated. “That’s the priority now,” she said.