Health
Young gay Latinos see rising share of new HIV cases, leading to call for targeted funding
Fernando Hermida diagnosed four months after asking for asylum
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, recalling how a chill washed over him as he reviewed his results. He struggled to navigate a new, convoluted health care system. Through an HIV organization he found online, he received a list of medical providers to call in D.C., where he was at the time, but they didn’t return his calls for weeks. Hermida, who speaks only Spanish, didn’t know where to turn.
By the time of Hermida’s diagnosis, 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 percent 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 U.S. overall, Latinos made up the largest share of new HIV diagnoses and infections among gay and bisexual men in 2022, per the most recent data available, compared with other racial and ethnic groups. Latinos, who make up about 19 percent of the U.S. population, accounted for about 33 percent 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. Public health officials in Mecklenburg County, North Carolina, and Shelby County, Tennessee, where data shows diagnosis rates have gone up among Latinos, told KFF Health News and the AP that they either don’t have specific plans to address HIV in this population or that plans are still in the works. Even in well-resourced places like San Francisco, HIV diagnosis rates grew among Latinos in the last few years while falling among other racial and ethnic groups despite the county’s goals to reduce infections among Latinos.
“HIV disparities are not inevitable,” Robyn Neblett Fanfair, director of the CDC’s Division of HIV Prevention, said in a statement. She noted the systemic, cultural, and economic inequities — such as racism, language differences, and medical mistrust.
And though the CDC provides some funds for minority groups, Latino health policy advocates want HHS 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
Lost without an interpreter
Hermida suspects he contracted the virus while he was in an open relationship with a male partner before he came to the U.S. In late January 2022, months after his symptoms started, he went to a clinic in New York City that a friend had helped him find to finally get treatment for HIV.
Too sick to care for himself alone, Hermida eventually moved to Charlotte to be closer to family and in hopes of receiving more consistent health care. He enrolled in an Amity Medical Group clinic that receives funding from the Ryan White HIV/AIDS Program, a federal safety-net plan that serves over half of those in the nation diagnosed with HIV, regardless of their citizenship status.
His HIV became undetectable after he was connected with case managers. 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 at the clinic.
Hermida said he had a hard time filling out paperwork to stay enrolled in the Ryan White program, and when his eligibility expired in September 2023, he couldn’t get his medication.
He left the clinic and enrolled in a health plan through the Affordable Care Act marketplace. But Hermida 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 — the equivalent of 120 rides, he said. 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. It was approved by the federal government in 2012 but the uptake has not been even across racial and ethnic groups: CDC data show much lower rates of PrEP coverage among Latinos than among white Americans.
Epidemiologists say high PrEP use and consistent access to treatment are necessary to build community-level resistance.
Carlos Saldana, an infectious disease specialist and former medical adviser for Georgia’s health department, helped identify five clusters of rapid HIV transmission involving about 40 gay Latinos and men who have sex with men from February 2021 to June 2022. Many people in the cluster told researchers they had not taken PrEP and struggled to understand the health care system.
They experienced other barriers, too, Saldana said, including lack of transportation and fear of deportation if they sought treatment.
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 things like HIV health care services, treatment, and prevention in 2022, only 4% went to prevention, according to a KFF analysis.
They suggest more money could help reach Latino communities through efforts like faith-based outreach at churches, testing at clubs on Latin nights, and training bilingual HIV testers.
Latino Rates Going Up
Congress has appropriated $2.3 billion over five years to the Ending the HIV Epidemic initiative, and jurisdictions that get the money are to invest 25 percent of it in community-based organizations. But the initiative lacks requirements to target any particular groups, including Latinos, leaving it up to the cities, counties, and states to come up with specific strategies.
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.
Starting Aug. 1, state and local health departments will have to provide annual spending reports on funding in places that account for 30 percent or more of HIV diagnoses, the CDC said. Previously, it had been required for only a small number of states.
In some states and counties, initiative funding has not been enough to cover the needs of Latinos.
South Carolina, which saw rates nearly double for Latinos from 2012-2022, hasn’t expanded HIV mobile testing in rural areas, where the need is high among Latinos, said Tony Price, HIV program manager in the state health department. South Carolina can pay for only four community health workers focused on HIV outreach — and not all of them are bilingual.
In Shelby County, Tennessee, home to Memphis, the Latino HIV diagnosis rate rose 86 percent from 2012 to 2022. The health department said it got $2 million in initiative funding in 2023 and while the county plan acknowledges that Latinos are a target group, department director Michelle Taylor said: “There are no specific campaigns just among Latino people.”
Up to now, Mecklenburg County, North Carolina, didn’t include specific targets to address HIV in the Latino population — where rates of new diagnoses more than doubled in a decade but fell slightly among other racial and ethnic groups. The health department has used funding for bilingual marketing campaigns and awareness about PrEP.
Moving for medicine
When it was time to pack up and move to Hermida’s third city in two years, his fiancé, who is taking PrEP, suggested seeking care in Orlando, Fla.
The couple, who were friends in high school in Venezuela, had some family and friends in Florida, and they had heard about Pineapple Healthcare, a nonprofit primary care clinic dedicated to supporting Latinos living with HIV.
The clinic is housed in a medical office south of downtown Orlando. Inside, the mostly Latino staff is dressed in pineapple-print turquoise shirts, and Spanish, not English, is most commonly heard in appointment rooms and hallways.
“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.
“¿Te mudaste reciente, ya por fin?” asked nurse practitioner Eliza Otero. Did you finally move? She started treating Hermida while he still lived in Charlotte. “Hace un mes que no nos vemos.” It’s been a month since we last saw each other.
They still need to work on lowering his cholesterol and blood pressure, she told him. Though his viral load remains high, Otero said it should improve with regular, consistent care.
Pineapple Healthcare, which doesn’t receive initiative money, offers full-scope primary care to mostly Latino males. Hermida gets his HIV medication at no cost there because the clinic is part of a federal drug discount program.
The clinic is 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. Florida has the third-largest Latino population in the U.S., and had the seventh-highest rate of new HIV diagnoses among Latinos in the nation in 2022.
Hermida, whose asylum case is pending, never imagined getting medication would be so difficult, he said during the 500-mile drive from North Carolina to Florida. After hotel rooms, jobs lost, and family goodbyes, he is hopeful his search for consistent HIV treatment — which has come to define 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.”
KFF Health News and The Associated Press analyzed data from the U.S. Centers for Disease Control and Prevention on the number of new HIV diagnoses and infections among Americans ages 13 and older at the local, state, and national levels. This story primarily uses incidence rate data — estimates of new infections — at the national level and diagnosis rate data at the state and county level.
Bose reported from Orlando, Fla.. Reese reported from Sacramento, Calif. AP video journalist Laura Bargfeld contributed to this report.
The Associated Press Health and Science Department receives support from the Robert Wood Johnson Foundation. The AP is responsible for all content.
This article was produced by KFF Health News, which publishes California Healthline, an editorially independent service of the California Health Care Foundation.
A Project of KFF Health News and the Associated Press co-published by Univision Noticias
CREDITS:
Reporters: Vanessa G. Sánchez, Devna Bose, Phillip Reese
Cinematography: Laura Bargfeld
Photography: Laura Bargfeld, Phelan M. Ebenhack
Video Editing: Federica Narancio, Kathy Young, Esther Poveda
Additional Video: Federica Narancio, Esther Poveda
Web Production: Eric Harkleroad, Lydia Zuraw
Special thanks to Lindsey Dawson
Editors: Judy Lin, Erica Hunzinger
Data Editor: Holly Hacker
Social Media: Patricia Vélez, Federica Narancio, Esther Poveda, Carolina Astuya, Natalia Bravo, Juan Pablo Vargas, Kyle Viterbo, Sophia Eppolito, Hannah Norman, Chaseedaw Giles, Tarena Lofton
Translation: Paula Andalo
Copy Editing: Gabe Brison-Trezise
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District of Columbia
Trans activists arrested outside HHS headquarters in D.C.
Protesters demonstrated directive against gender-affirming care
Authorities on Tuesday arrested 24 activists outside the U.S. Department of Health and Human Services headquarters in D.C.
The Gender Liberation Movement, a national organization that uses direct action, media engagement, and policy advocacy to defend bodily autonomy and self-determination, organized the protest in which more than 50 activists participated. Organizers said the action was a response to changes in federal policy mandated by Executive Order 14187, titled “Protecting Children from Chemical and Surgical Mutilation.”
The order directs federal agencies and programs to work toward “significantly limiting youth access to gender-affirming care nationwide,” according to KFF, a nonpartisan, nonprofit organization that provides independent, fact-based information on national health issues. The executive order also includes claims about gender-affirming care and transgender youth that critics have described as misinformation.
Members of ACT UP NY and ACT UP Pittsburgh also participated in the demonstration, which took place on the final day of the public comment period for proposed federal rules that would restrict access to gender-affirming care.
Demonstrators blocked the building’s main entrance, holding a banner reading “HANDS OFF OUR ‘MONES,” while chanting, “HHS—RFK—TRANS YOUTH ARE NO DEBATE” and “NO HATE—NO FEAR—TRANS YOUTH ARE WELCOME HERE.”
“We want trans youth and their loving families to know that we see them, we cherish them, and we won’t let these attacks go on without a fight,” said GLM co-founder Raquel Willis. “We also want all Americans to understand that Trump, RFK, and their HHS won’t stop at trying to block care for trans youth — they’re coming for trans adults, for those who need treatment from insulin to SSRIs, and all those already failed by a broken health insurance system.”
“It is shameful and intentional that this administration is pitting communities against one another by weaponizing Medicaid funding to strip care from trans youth. This has nothing to do with protecting health and everything to do with political distraction,” added GLM co-founder Eliel Cruz. “They are targeting young people to deflect from their failure to deliver for working families across the country. Instead of restricting care, we should be expanding it. Healthcare is a human right, and it must be accessible to every person — without cost or exception.”
Despite HHS’s efforts to restrict gender-affirming care for trans youth, major medical associations — including the American Medical Association, the American Academy of Pediatrics, and the Endocrine Society — continue to regard such care as evidence-based treatment. Gender-affirming care can include psychotherapy, social support, and, when clinically appropriate, puberty blockers and hormone therapy.
The protest comes amid broader shifts in access to care nationwide.
NYU Langone Health recently announced it will stop providing transition-related medical care to minors and will no longer accept new patients into its Transgender Youth Health Program following President Donald Trump’s January 2025 executive order targeting trans healthcare.
Health
CMS moves to expand HIV-positive organ transplants
HIV/AIDS activists welcome potential development
The Centers for Medicare and Medicaid Services is pushing forward a proposed rule that would make it not only easier for people with HIV in need to get organ transplants from HIV-positive donors, but also make it a priority where there was often a barrier.
The Washington Blade sat down with people familiar with this topic — from former heads of the Centers for Disease Control and Prevention, to HIV activists and to the first HIV-positive person to donate an organ — about what this proposed change could mean.
HIV is a virus that attacks the body’s immune system, particularly targeting the body’s T-cells, which makes it harder to fight off infection and disease. If left untreated, HIV can become AIDS. Without treatment, AIDS can lead to death within a few months or years. The virus is spread through direct contact with bodily fluids — often through sex, unclean needles, or from mother to baby during pregnancy.
According to HIV.gov, a website managed by the U.S. Department of Health and Human Services, approximately 1.2 million people in the U.S. were living with HIV in 2022. Of those 1.2 million, 13 percent don’t know they have it.
The virus disproportionately impacts men who have sex with men and people of color.
The CDC’s statistics show men are most affected, making up almost 80 percent of diagnoses, with gay and bisexual men accounting for the majority. Racial disparities also are present — Black people make up 38 percent of diagnoses. The World Health Organization estimates that around 44.1 million people have died from AIDS-related illnesses globally as of 2024.
Since the virus was first detected 45 years ago, scientists have been working on ways to treat and prevent its spread. In 1987, the first breakthrough in fighting HIV came as the U.S. approved the first HIV medication, AZT — marking the beginning of antiretroviral therapy. This medicine — and later descendants of it, like today’s widely prescribed Biktarvy — stop the HIV virus from reproducing and allow the body to keep its T-cells.
Then in 2012, another big step toward minimizing the scope of the potentially fatal disease came as the CDC approved the first HIV prevention medication, Truvada, more commonly known as PrEP. As of 2024, nearly 600,000 people in the U.S. are using PrEP, according to AIDSVu, which uses data from Gilead Sciences (manufacturers of Truvada and Biktarvy) and is compiled by researchers at the Rollins School of Public Health at Emory University.
The following year, in 2013, the HIV Organ Policy Equity (HOPE) Act was signed into law, enabling the use of organs from HIV-positive donors for transplants into HIV-positive recipients, overturning a 1988 ban.
There are an estimated 123,000 people waiting for organ transplants in the U.S. The number of HIV-positive people on that list is estimated to be smaller, harder to precisely quantify, but they are still in dire need.
A study from the New England Journal of Medicine, published in 2024, analyzed the outcomes of 198 kidney transplantations to people with HIV at 26 medical centers across the U.S. from 2018 to 2021.
Results from the study showed that for kidney transplants performed using organs from 99 donors with HIV and 99 without HIV, one-year survival rates for HIV-positive recipients were nearly identical (94 percent and 95 percent, respectively). Three-year survival rates were also similar (85 percent and 87 percent). Organ rejection rates were also numerically on par after three years (21 percent and 24 percent). Other measures for surgical outcomes, including the number of side effects that occurred, were also roughly the same for both groups.
This shows that, overall, HIV-positive-to-HIV-positive transplants are nearly identical in outcome to transplants between HIV-negative donors and recipients.
Where we are now
Now in 2026, CMS is pushing past the clinical trial testing phase it has been in, making HIV-positive-to-HIV-positive organ transplants more widespread and more accessible.
Adrian Shanker, the former deputy assistant secretary for health policy and senior advisor on LGBTQ health equity at HHS, explained to the Blade that the HOPE Act was a step in the right direction, but this policy change from CMS will expand the ability to help HIV-positive patients in need.
“The original HOPE Act asked for scientific research,” Shanker explained. “There were 10 years of clinical trials. The Biden administration promulgated a rule that removed clinical trial requirements for kidney and liver transplants between people living with HIV. This proposed rule is further implementation on the CMS side with the organ procurement organizations to ensure they’re carrying out the stated intent of the HOPE Act law. It’s building on consensus that has existed through multiple administrations.”
The proposed change would go into effect on July 1, and, according to Shanker, would help everyone in need of an organ — not just HIV-positive people.
“People living with HIV, their ability to receive organs from other people living with HIV in a more streamlined way means that the overall organ waitlist is sped up as well,” he added. “So it benefits everyone on the waitlist.”
Shanker, who was also a member of the Presidential Advisory Council on HIV/AIDS, spoke about how this is a rare moment of bipartisanship.
“There’s no secret that the Trump administration has been quite adversarial to LGBTQI plus health, and to the health of people living with HIV/HIV prevention resources as well … From destabilizing PEPFAR to shutting down one of the primary implementation partners, which is USAID, to firing almost the entire staff of the Office of Infectious Disease and HIV Policy at HHS … But what this is is a glimmer of hope that we can have bipartisan solutions that improve quality of life for people living with HIV.”
Harold Phillips, the CEO of NMAC, a national HIV/AIDS organization that pushes policy education and public engagement to end the HIV epidemic, and an HIV-positive American, sees this as a huge gain for the HIV-positive community.
“For a number of years, we were excluded from that pool of potential donors,” Phillips said. “Many people living with HIV were excluded from being able to get organ transplants. So this opens up that door. This is a positive step forward that will help save lives.”
That “open door,” Phillips said, does more than just provide life-saving organs to people in the most need. It provides a sense of being able to support their community.
“I remember when I was no longer able to check that box on my driver’s license,” Phillips recalled during his interview with the Blade. “I remember what that meant — that my organs might not be able to save a life. The potential that now they could is really exciting for me.”
“To think about people living with HIV donating their organs to other people living with HIV and helping extend their health and well-being — that’s an exciting moment in our history. It reinforces that HIV is not a death sentence anymore.”
Human Rights Campaign Senior Public Policy Advocate Matt Rose also sat down with the Blade to explain the realities of HIV-positive people in the U.S. right now who are looking for a transplant.
“If you’re HIV positive and on the waitlist for an organ right now, your chance of getting one is slim to nil,” Rose said. “This at least gives you a real shot.”
He went on to explain that while the HOPE Act started to move in the right direction, it hasn’t done enough for HIV-positive people in dire need.
“This bill [HOPE] was supposed to fix that — and it never really has. But every administration, we keep chipping away at the next hurdle,” he said. “This latest move will drastically expand the ability for someone who is HIV positive to donate an organ.”
That slow chipping away, in addition to the non-stop trials being done to prove the efficacy and ability for HIV-positive people’s bodies to accept organ donation, is part of the broader push to normalize this practice and remove outdated restrictions.
Shanker elaborated, explaining all that time was necessary to figure out the efficacy of HIV-positive-to-HIV-positive organ transplants but now that the data has been collected — its time to expand the availability.
“There were over a decade of clinical trials between the original HOPE Act law being signed by President Obama and our rule being promulgated at the end of the Biden administration. It was to allow those clinical trials to run their course,” Shanker said.
Nina Martinez is the first HIV-positive person to donate an organ to another person with HIV.
She explained that the stigma and lack of understanding from the general public is another hurdle that those working to improve the quality of life for people living with HIV have to deal with.
“People don’t generally understand that treatment works,” Martinez said, who became the first person to undergo HIV-positive organ donation in 2019. “When you have access to antiretroviral therapy, it lowers the virus in your bloodstream to levels so low that lab tests can’t detect it. Clinically, that correlates to good health and an inability to transmit HIV sexually. I was healthy enough to pass the same evaluation as any other living donor without HIV.”
She continued explaining:
“Just by having a diagnosis of HIV, they’re labeling donors as medically complex, and that’s not accurate. Every donor with HIV has to pass the same evaluation as donors without HIV,” she said. “If someone passes that evaluation and still isn’t allowed to donate, that’s discrimination. If a patient is willing to accept that organ and you block it because of preconceived notions, you’re denying someone care based on disability. That runs counter to basic fairness.”
When asked about her decision to become a donor and what message she hopes it sends, Martinez emphasized that the choice should remain personal.
“I didn’t undertake this endeavor to say that people with HIV should donate. This is a community that’s been through a lot and has contributed to science — we have served. But for people who wanted a way to leave a legacy, and that is what I wanted, they should be supported in that. There shouldn’t be arcane scientific perceptions and myths getting in the way of that.”
National Donor Day, which raises awareness of organ donation, is on Feb. 14. To become an organ donor, visit registerme.org.
Health
CVS Health agrees to cover new HIV prevention drug
‘Groundbreaking’ PrEP medication taken by injection once every six months
CVS Health, the nation’s second largest pharmacy benefit manager company that plays a key role in deciding which drugs are covered by health insurance policies, has belatedly agreed to cover the new highly acclaimed HIV prevention drug yeztugo.
The U.S. Food and Drug Administration approved the use of yeztugo as an HIV prevention or “PrEP” medication in June 2025 as the first such drug to be taken by injection just once every six months. AIDS activists hailed the drug as a major breakthrough in the longstanding effort to end the HIV epidemic.
“We are pleased that CVS Health has finally decided to cover this groundbreaking new PrEP mediation,” said Carl Schmid, executive director of the HIV+ Hepatitis Policy Institute.
“Four months ago, 63 HIV organizations joined us in sending a letter to CVS’s president urging them to reconsider their refusal to cover Yeztugo and reminding them of their legal obligation to cover PrEP and describe the important benefits the drug would bring to preventing HIV in the U.S.,” Schmid said in a statement.
He noted that CVS Health now joins other leading pharmacy benefit manager companies and insurers in covering yeztugo. Gilead Sciences, the pharmaceutical company that developed and manufactures yeztugo, has said 85 percent of all people with health insurance in the U.S. now have coverage for the drug, according to Schmid.
“However, coverage does not automatically translate into access and usage,” Schmid said in his statement. “Too many people are being forced to pay copays while other payers, including employers, are failing to cover all forms of PrEP,” he said.
According to Schmid, the HIV+ Hepatitis Policy Institute is joining other HIV advocacy organizations in urging federal and state government officials to engage in “aggressive enforcement of PrEP insurance coverage requirements and sustained funding of state, local, and community HIV prevention programs.”
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