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AIDS 2012: Sebelius unveils public-private collaborations to fight disease

HHS to work with MAC AIDS Fund, Walgreens, others

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Secretary of Health & Human Services Kathleen Sebelius announced four HIV/AIDS private-public initiatives Sunday. (Blade photo by Michael Key)

Health & Human Services Secretary Kathleen Sebelius announced four new public-private initiatives on Sunday night aimed at removing barriers that cause some living with HIV/AIDS within the United States to fall out of care.

Sebelius announced the projects — including a new $4.5 million multi-year project with the MAC AIDS Fund called the Care for Life Initiative — during remarks she delivered as the final speaker on the opening night of the 19th International AIDS Conference, which is being held in the United States for the first time since 1990. An estimated 25,000 are in attendance for the week-long conference in D.C.

“Perhaps the most important principle in our national strategy is one we’ve been reminded of over and over again in our response to HIV/AIDS: none of us can do this alone,” Sebelius said. “That’s why we’re making a new effort to reach to community-based organizations, businesses, foundations, NGOs, faith organizations and more.”

The Care for Life Initiative is a collaboration of the MAC AIDS fund, which was established in 1994 to support people who are living with HIV/AIDS across the world, and has three arms that aim to keep people with HIV/AIDS within care, according to a statement from the organization:

  • A $4 million partnership with AIDS United over the next three years to create an innovation fund on the both the national and regional levels to improve retention in care and treatment adherence. Geographic focuses will be determined based on need and capacity of the local providers to address that need. It will also involve an open call for proposals.
  • Working with the Health Resources and Services Administration, or HRSA, for a pilot launch of UCARE4LIFE, an evidence-based program that will employ mobile texting to improve care retention and medication adherence. With a focus on Southern states, the two-year project consists of developing a message library for delivering phone text notifications to HIV-positive individuals — in English and Spanish — regarding medical appointment reminders and taking medications.
  • MAC AIDS Fund will work with HHS and the President’s Emergency Plan for AIDS Relief to convene a meeting of international leaders in fall 2012 on leveraging global lessons on HIV care. This forum is expected to explore lessons from PEPFAR that can be applied to the United States for best practices on treatment and retention.

According to the MAC AIDS Fund, under the current system, one in two people living with HIV/AIDS in the United States falls out of care.

Nancy Mahon, global executive director of the MAC AIDS Funds, said the Care for Life Initiative is important because it uses new technologies and ideas in its outreach to people with HIV/AIDS.

“We cannot end the epidemic without breakthrough approaches that support and empower those living with HIV/AIDS to stay connected to the care and life-saving treatment they deserve,” Mahon said.

Besides the Care for Life Initiative, Sebelius also hit on the other three initiatives during her remarks. With the pharmaceutical retailer Walgreens, she announced a three-year partnership with the Centers for Disease Control to explore ways in which pharmacies can help patients stay on their medications. According to a news statement, Walgreens is supplying nearly $1 million in in-kind services for this initiative.

With Medscape, a leading provider of online continuing education for U.S. clinicians, Sebelius unveiled partnership training programs with the Centers for Medicare & Medicaid to help clinicians better understand and address HIV patients’ needs. According to a news statement, three new training modules have already been created for physicians, nurses and other medical professionals.

Finally, Sebelius announced that HHS is partnering with the eight largest AIDS drug companies — Abbot Laboratories, Boehringer Ingelheim, Bristol Myers Squibb, Gilead, Genentech, Johnson & Johnson, Merck and ViiV — to create a single application form for AIDS medications offered through their patient assistance programs.

“I want to thank all of these partners for stepping up,” Sebelius said. “And we will continue to seek out new public-private collaborations that will help us beat this disease.”

In addition to announcing the new public-private partnerships, Sebelius also revealed that the Food & Drug Administration would announce this week that more than 150 antiretroviral drugs are now available through PEPFAR.

The secretary also enumerated earlier initiatives of the Obama administration, including last week’s decision to distribute nearly $80 million to the states “to allow them to fully clear” wait lists for AIDS Drug Assistance Programs, which provide HIV/AIDS drugs to low-income people. An estimated 2,000 people nationwide had been awaiting drugs through programs.

According to a statement from HHS, around $69 million will be sent to 25 states and territories and, based on estimates provided by the states, will eliminate any waiting lists. The remaining $10 million — a portion of which was allocated by the Affordable Care Act — will be distributed to community-based health clinics nationwide to expand access for 14,000 new HIV/AIDS patients for medical and support services.

Other initiatives against HIV/AIDS under the Obama administration that Sebelius touted were recent FDA approval of an at-home HIV test and using Truvada to prevent HIV infection. Sebelius also credited the Bush administration, calling PEPFAR, which was established under the previous administration, one of “the great health success stories of the 21st century.”

“Our task now is to make it even stronger,” Sebelius said.

“Under President Obama, we’re on pace to achieve an ambitious goal of reaching an additional two million people around the world with life-saving treatment by the end of 2013. At the same time, we’re putting a renewed focus on the key ‘combination prevention’ interventions that have proven most effective in combating HIV.”

The secretary’s mention of PEPFAR received among the most applause of anything discussed that evening before an audience that included many HIV/AIDS advocates from overseas. Obama’s fiscal year 2013 budget request cuts the program by half a billion dollars, but the White House has said PEPFAR is an example of a program that is doing more with less because of the reduced cost of drugs.

Sebelius wasn’t the only public official representing the United States on the stage during the opening night of the conference. Rep. Barbara Lee (D-Calif.), a renowned LGBT and HIV/AIDS advocate, also spoke on stage to call for an end to the epidemic, observing it has had a particularly devastating impact on black Americans.

“Although AIDS has made the transition from a death sentence to a chronic disease, new infections unfortunately continue at alarming rates,” Lee said. “HIV/AIDS disproportionately affects no group of people in our country more than African Americans. Of the 1.4 million people in the United States living with HIV, nearly half are black men and women, even though blacks make up 14 percent of the population.”

Last week, Lee announced that had introduced into the U.S. House legislation called the “Ending the HIV/AIDS Epidemic Act.” The bill has 26 co-sponsors who are all Democrats and aims to establish a policy and financing framework to eliminate AIDS domestically and abroad.

The bill aims to fight HIV/AIDS by providing additional funds for programs such as the AIDS Drug Assistance Programs; addressing policy barriers to accessing prevention and care, such as encouraging condom use in prisons; and calling for a more advanced strategy overseas to end the global AIDS epidemic.

D.C. Mayor Vincent Gray (Washington Blade photo by Michael Key)

D.C. Mayor Vincent Gray also took to the stage to welcome international attendees to D.C. and talk about how HIV/AIDS has impacted the city.

“HIV/AIDS has crossed all racial, ethnic, religious and socio-economic borders,” Gray said. “It is a disease that knows no boundaries.”

According to Gray, an estimated 20,000 people in D.C. have been infected with HIV/AIDS, and 10,000 residents have died as a result of the disease.

Other speakers on Sunday were Annah Sango, a Zimbabwe advocate living with HIV who seeks visibility for female patients, World Bank President Jim Yong Kim, who said he was the first World Bank president to the address the international conference, UNAIDS Executive Director Michel Sidibé, South African Deputy President Kgalema Motlanthe and Mark Dybul, global AIDS coordinator for President George W. Bush who touted that administration’s achievements in the global AIDS fight.

The co-chairs of the conference, Elly Katabira, a Ugandan activist and president of the International AIDS Society, and Diane Havlir, chief of HIV/AIDS Division at the University of California, San Francisco, welcomed attendees to the conference. U.N. Secretary General Ban Ki-Moon prepared a video message for attendees.

Also on Sunday, the White House unveiled a video message from Obama welcoming the international attendees to the conference. The video message was prepared in lieu of a live appearance by Obama at the conference.

In the video, Obama talks about HIV/AIDS advocates’ commitment to fighting the disease and a voice-over talks about discovery of the disease in the 1980s as well as activism and scientific advances to thwart it.

Watch the video below:

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As house Democrats release Epstein photos, Garcia continues to demand DOJ transparency

Blade this week sat down with gay House Oversight Committee ranking member

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A photo released by the House Oversight Committee showing Donald Trump 's close relationship with Jeffrey Epstein . (Photo courtesy of the U.S. House Oversight Committee)

Democrats on the House Oversight Committee have released new photos from Jeffrey Epstein’s email and computer records, including images highlighting the relationship between President Donald Trump and the convicted sex offender.

Epstein, a wealthy financier, was found guilty of procuring a child for prostitution and sex trafficking, serving a 13-month prison sentence in 2008. At the time of his death in prison under mysterious circumstances, he was facing charges of sex trafficking and conspiracy to traffic minors.

Among those pictured in Epstein’s digital files are Trump, former President Bill Clinton, former Trump adviser Steve Bannon, actor and director Woody Allen, economist Larry Summers, lawyer Alan Dershowitz, entrepreneurs Richard Branson and Bill Gates, and Andrew Mountbatten-Windsor.

One photo shows Trump alongside Epstein and a woman at a Victoria’s Secret party in New York in 1997. American media outlets have published the image, while Getty Images identified the woman as model Ingrid Seynhaeve.

Oversight Committee Democrats are reviewing the full set of photos and plan to release additional images to the public in the coming days and weeks, emphasizing their commitment to protecting survivors’ identities.

With just a week left for the Justice Department to publish all files related to Epstein following the passage of the Epstein Files Transparency Act, which requires the Justice Department to release most records connected to Epstein investigations, the Washington Blade sat down with U.S. Rep. Robert Garcia (D-Calif.), the ranking member on the Oversight Committee to discuss the current push the release of more documents.

Garcia highlighted the committee’s commitment to transparency and accountability.

U.S. Rep. Robert Garcia (D-Calif.) during a sit down with the Washington Blade. (Washington Blade photo by Michael Key)

“We’ve said anything that we get we’re going to put out. We don’t care who is in the files … if you’ve harmed women and girls, then we’ve got to hold you accountable.”

He noted ongoing questions surrounding Trump’s relationship with Epstein, given their long history and the apparent break in friendship once Trump assumed public office.

“There’s been a lot of questions about … Donald Trump and Jeffrey Epstein. They were best friends for 10 years … met women there and girls.”

Prior to Trump’s presidency, it was widely reported that the two were friends who visited each other’s properties regularly. Additional reporting shows they socialized frequently throughout the 1990s and early 2000s, attending parties at Trump’s Mar-a-Lago resort in Florida and Epstein’s residences. Flight logs from an associate’s trial indicate Trump flew on Epstein’s private jet multiple times, and Epstein claimed Trump first had sex with his future wife, Melania Knauss, aboard the jet.

“We’ve provided evidence … [that leads to] questions about what the relationship was like between Donald Trump and Jeffrey Epstein.”

Garcia stressed the need for answers regarding the White House’s role in withholding information, questioning the sudden change in attitude toward releasing the files given Trump’s campaign promises.

“Why is the White House trying to cover this up? So if he’s not covering for himself … he’s covering up for his rich friends,” Garcia said. “Why the cover up? Who are you hiding for? I think that’s the question.”

He confirmed that Trump is definitively in the Epstein files, though the extent remains unknown, but will be uncovered soon.

“We know that Trump’s in them. Yeah, he’s been told. We know that Trump’s in them in some way. As far as the extent of it … we don’t know.”

Garcia emphasized accountability for all powerful figures implicated, regardless of financial status, political party, or personal connections.

“All these powerful men that are walking around right now … after abusing, in some cases, 14‑ and 15‑year‑old girls, they have to be held accountable,” he said. “There has to be justice for those survivors and the American public deserves the truth about who was involved in that.”

He added that while he is the ranking member, he will ensure the oversight committee will use all available political tools, including subpoenas — potentially even for the president. 

“We want to subpoena anyone that we can … everyone’s kind of on the table.”

He also emphasized accountability for all powerful figures implicated, regardless of financial status, political party, or relationship with the president.

“For me, they’re about justice and doing the right thing,” Garcia said. “This is about women who … were girls and children when they were being abused, trafficked, in some cases, raped. And these women deserve justice.”

“The survivors are strong.”

Deputy White House Press Secretary Abigail Jackson issued a statement regarding the release the photos, echoing previous comments from Republicans on the timing and framing of the photos by the Oversight Committee.

“Once again, House Democrats are selectively releasing cherry-picked photos with random redactions to try and create a false narrative,” Jackson said.

“The Democrat hoax against President Trump has been repeatedly debunked and the Trump administration has done more for Epstein’s victims than Democrats ever have by repeatedly calling for transparency, releasing thousands of pages of documents, and calling for further investigations into Epstein’s Democrat friends,”

In a press release on Friday, Garcia called for immediate DOJ action:

“It is time to end this White House cover-up and bring justice to the survivors of Jeffrey Epstein and his powerful friends. These disturbing photos raise even more questions about Epstein and his relationships with some of the most powerful men in the world. We will not rest until the American people get the truth. The Department of Justice must release all the files, NOW.”

Steve Bannon and Jeffrey Epstein in Epstein Files photo. (Photo courtesy of the U.S. House Oversight Committee)
Trump in another photo from Epstein’s digital files. (Photo courtesy of the U.S. House Oversight Committee)
(Photo courtesy of the U.S. House Oversight Committee)
Bill Gates and Andrew Montbatton-Windsor in Epstein Files photo. (Photo courtesy of the U.S. House Oversight Committee)
Bill Clinton and Ghislaine Maxwell and Jeffrey Epstein in Epstein Files photo.
(Photo courtesy of the U.S. House Oversight Committee)

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White House deadnames highest-ranking transgender official

Rachel Levine’s portrait altered at HHS

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Adm. Rachel Levine speaks at the International LGBTQ Leaders Conference on Dec. 2, 2021. (Washington Blade photo by Michael Key)

Admiral Rachel Levine — the first transgender person ever confirmed by the U.S. Senate and the highest-ranking trans official in American history — had her official portrait in the Humphrey Building altered, with staff replacing her correct name with her deadname, the name she has not used since 2011.

NPR first reported the change, and an HHS spokesperson confirmed to the outlet that Levine’s portrait had recently been altered. A digital photograph obtained by NPR shows Levine’s former (male) name typed on a placard beneath the portrait, placed under the glass of the frame.

Levine served as a four-star admiral in the U.S. Public Health Service Commissioned Corps under the Biden-Harris administration and was appointed the 17th assistant secretary for health.

During her tenure, Levine oversaw the Commissioned Corps and helped lead national public-health initiatives, including the federal COVID-19 response and vaccination strategy; efforts to address rising syphilis infection rates; HIV/AIDS prevention and treatment programs; and strategies to combat the opioid epidemic, particularly through expanded harm-reduction approaches for the communities most affected.

The Trump-Vance administration’s decision to publicly deadname Levine is widely viewed within the trans community as demeaning and disrespectful. The move comes amid a series of federal policy reversals targeting LGBTQ Americans, particularly trans youth seeking gender-affirming care.

Those actions include: weakening workplace protections for LGBTQ employees; limiting restroom access; downgrading gender-identity discrimination cases; pressuring hospitals to end gender-affirming care; cutting HIV research and prevention funding; removing LGBTQ crisis resources; restricting access to trans-inclusive medical policies for veterans and young people; supporting trans sports bans and threatening funding for teams that include trans athletes; and forcing schools and universities to eliminate DEI and LGBTQ offices, inclusive curricula, gender-neutral bathrooms, and books or training materials addressing LGBTQ issues.

The Trump–Vance administration has also expanded federal censorship by removing LGBTQ language from surveys, agency websites, Smithsonian materials, and human-rights reports; blocking Pride recognitions; creating federal communications that misgender trans women; imposing passport and travel barriers for trans Americans; lifting protections for trans service members; limiting benefits and care for LGBTQ veterans; and pressuring states, universities, and hospitals to end trans-inclusive policies under threat of losing federal research, education, or Medicaid funds. The administration has additionally deported LGBTQ asylum seekers to unsafe conditions, removed LGBTQ issues from global human-rights reporting, and escalated anti-trans rhetoric at public events.

These actions stand in stark contrast to Levine’s public-health record. As assistant secretary for health, she worked to expand LGBTQ+ health data collection, promote equitable vaccine distribution, strengthen national health-equity initiatives, and reduce care disparities experienced by historically underserved communities, including LGBTQ populations. Within HHS, she led councils and task forces dedicated to reducing structural barriers to care and improving community outcomes.

Before joining the federal government, Levine oversaw health and safety for nearly 13 million residents as Pennsylvania’s physician general from 2015–2017 and as Pennsylvania secretary of health from 2018–2021.

Rachel Levine‘s official portrait, which now bears her deadname. (Photo public domain)

Asked by NPR about the alteration of her official portrait, Levine responded that it had been an honor to serve as assistant secretary for health, adding: “I’m not going to comment on this type of petty action.”

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The harsh truth about HIV phobia in gay dating

HIV and stigma remain baked into queer dating culture

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(Photo by Val Chaparro for Uncloseted Media)

Uncloseted Media published this article on Dec. 9.

This story was produced with the support of MISTR, a telehealth platform offering free online access to PrEP, DoxyPEP, STI testing, Hepatitis C testing and treatment and long-term HIV care across the U.S. MISTR did not have any editorial input into the content of this story.

By SAM DONNDELINGER | In his room, 19-year-old Cody Nester toggles between Grindr profiles on his phone.

As he senses chemistry with a match, he knows he has to flag something that could be a deal breaker.

“Did you see on my profile that I’m HIV positive?” he writes.

The reply arrives instantly.

“You’re disgusting. I don’t know why you’re on here.” Seconds later, the profile disappears, suggesting Nester is blocked.

“He went out of his way to say that. People could at least be more aware, ask questions, and understand the reality [of living with HIV] instead of attacking us,” Nester told Uncloseted Media.

“I would say 95 percent of people respond that way,” says Nester, who lives in Hollywood, Fla., and works at a Mexican restaurant. “The entire conversation is going fine. They’re down to meet up and then right when I mention [HIV], it’s always, ‘Oh no, never mind.’”

Some other messages he’s received include:

“You’ll never get anything in your life.”
“Why don’t you die?”
“Why are you on here?”

More often, it’s silence, a cold “No” or a sudden block.

“It’s like you’re a white fish in a school of black fish,” he says. “You’re immediately the odd one out.”

Even though Nester’s undetectable status makes it impossible for him to transmit HIV to partners during sex, he experiences stigma around HIV, something which nearly 90 percent of Americans agree still exists, according to a 2022 GLAAD report. And a survey shared in 2019 found that 64 percent of respondents would feel uncomfortable having sex with someone living with HIV, even on effective treatment. The emotional cost of this stigma is a significant barrier to intimacy and can result in a loss of self-esteem, fear of disclosure and suicidal thoughts.

What the science says — and why it doesn’t seem to matter

“The fear comes from antiquated ideas around HIV,” says Xavier A. Erguera, senior clinical research coordinator at University of California, San Francisco,’s Division of HIV, Infectious Diseases & Global Medicine. “A lot of people who are newly diagnosed still fear it’s a death sentence. Even though we have medications now to treat it effectively, and it’s basically a chronic condition, people haven’t caught up.”

Since 1996, antiretroviral therapies have developed to where they can suppress the virus to levels so low that it is undetectable in the blood, and thus not able to be transmitted to sexual partners. This is known as Undetectable = Untransmittable, or U=U. According to a Centers for Disease Control and Prevention report from 2024, 65 percent of HIV-positive cases are virally suppressed.

Another line of defense is pre-exposure prophylaxis (PrEP), which reduces the risk of acquiring HIV from sexual intercourse by roughly 99 percent when taken as prescribed. Approved by the Food and Drug Administration in 2012, the medication launched as a once-a-day pill and was hailed as a breakthrough as it transformed the sex lives of gay men, which had been shaped by decades of fear about HIV complications and about where AIDS came from.

“Internal logic doesn’t reflect what we know scientifically,” says Kim Koester, associate professor in the Department of Medicine at UCSF. “I was very optimistic when PrEP came out. The drug works, so why wouldn’t everyone use it?”

Even with PrEP use on the rise, less than 600,000 Americans used it in 2024, and Koester says skepticism and judgments about taking the drug persist.

“The phobia is pervasive,” Koester told Uncloseted Media. “People believe that others get the disease because of their lifestyle. … PrEP was supposed to be the antidote to the threat of HIV, reduce the anxiety, and make you more open to who you are and the sex you want. It’s supposed to be liberating. It is part of the answer. But it’s not enough. We don’t have enough people using PrEP for it to make the dent in the stigma we need.”

According to a 2023 study of seven informants living with HIV, public stigma stems from problematic views from society that those living with HIV are “a dangerous transmission source,” “disgraceful” and “violators of social and religious norms who have committed deviant behavior.”

Laramie Smith, assistant professor of Global Public Health at the University of California, San Diego, says this stigma is unwarranted and fueled by misunderstanding:

“With today’s treatments, it shouldn’t be a life-altering identity shift. It should be no different than, ‘I have diabetes.’ If you’re virally suppressed, it shouldn’t matter whether you’re friends with someone, whether you’re sleeping with someone — the science shows us that.”

How HIV phobia shows up online

Nester, who contracted HIV last year from a Grindr hook-up who insisted he was negative, says he is just starting to accept his diagnosis. “I didn’t go back on the apps for a long time after that. It messed with my mental health … realizing I’d have to take medication for the rest of my life.”

Since he started dating again this year, returning to apps like Grindr and Sniffies, he has faced a new normal. He tries to do everything “right” and disclose his status early. Even on his Grindr profile, he identifies as “poz,” slang for HIV-positive.

Still, he says most people ghost him once they find out. “The second I bring it up, it’s ‘No,’” says Nester. “The amount of discrimination you get … it’s always the same pattern. … People don’t know, and they don’t want to know. It messes with you.”

This discrimination may be fueled by a deprioritization of HIV awareness programs across the country. Earlier this month, the U.S. State Department did not commemorate World AIDS Day for the first time in 37 years. HIV prevention programs have been slashed, especially in conservative districts, and only 25 states and D.C. require both HIV and sex education. In many states, health curricula often lag behind current science and omit teaching about PrEP, gay sex and concepts like U=U. Research shows that Gen Z is currently the least educated generation about HIV.

“I could go all day explaining HIV, but people don’t want to listen,” says Nester, who is part of Gen Z. “People don’t want to learn about it; they just want to avoid it.”

HIV anxiety and public stigma shaped by history

Even in more progressive areas, stigma still exists. Damian Jack, a 45-year-old from Brooklyn, remembers sitting in an exam room in 2009 as a doctor explained how low his T-cell count was, which is a hallmark of HIV infection.

“I started hysterically crying,” he told Uncloseted Media. “HIV meant death. That’s what I thought.”

In 1981, when Jack was 1 year old, the first reports of a mysterious and deadly immune deficiency syndrome, which would later be named AIDS, appeared in the U.S. Growing up, Jack saw countless terrifying images of men on their deathbeds with Kaposi sarcoma, the purple lesions the media once called “gay cancer.” Public misinformation and fearmongering spread ideas that AIDS was a disease that “only gay men and drug users get.” And politicians often equated it with homosexuality and moral failure, calling it a “gay plague.” It wasn’t until September 1985, four years after the crisis began and thousands had died, that President Ronald Reagan first publicly mentioned AIDS.

Decades later, the emotional residue of that era and the shame associated with the virus lingers.

Hours after learning of his diagnosis, Jack faced his first encounter with rejection. He already had a date planned that night, and his doctor and friends encouraged him to go.

They had a great time until the date asked him: “Are you negative or positive?”

He told the truth.

“It was just understood there wouldn’t be a second date,” says Jack. “I remember thinking, ‘This is how dating is going to be now.’ I felt so anxious telling guys. It followed me everywhere. I don’t think that anxiety ever truly goes away.”

The emotional impact of HIV stigma

For those who are HIV-negative, experts say that “stigma’s whole design is to ‘other.’”

“The ‘us versus them’ creates that false sense of safety when it comes to HIV,” says Smith. “If I can believe that someone did something to deserve their diagnosis, and I’m not that [kind of person], then I’m safe.”

This othering is painful and can lead to shame, fear and isolation, and it is linked to a higher risk of depression and anxiety.

“If I’m undesirable, and that’s what those messages are communicating, that threatens your sense of safety, your sense of belonging and the fundamental desire we all have to be loved,” Smith says. “And that starts to reinforce the thinking that ‘I am not worthy. This virus that I have means that I’m not lovable. I am not safe showing up among other men.’”

“I pretend it doesn’t hurt, but some things do sting a little bit,” Nester says. “You start thinking, ‘Am I really that disgusting? Am I really that singled out?’”

When public stigma turns inward

“Internalized stigma is what occurs when applying the stereotypes about who gets HIV, the prejudice, the negative feelings, onto yourself,” says Smith.

In 2024, 38 percent of people living with HIV reported internalized stigma. And studies show that it can predict hopelessness and lower quality of life, even when people are engaged in care or virally suppressed.

Internalized stigma can also affect how people practice safe sex and communicate about the virus. A 2019 survey of men who have sex with men found that individuals who perceived greater community-level stigma were less likely to be aware of — and use — safer-sex functions available on dating apps, such as HIV-status disclosure fields, as well as sexual health information and resources.

“[HIV phobia] is probably the most intense, subvert bigotry I think you could experience,” Joseph Monroe Jr., a 48-year-old living in the Bronx, told Uncloseted Media.

On dating apps, men have messaged him things like, “You look like you’ve got that thing” and “Go ahead and infect someone else.”

Monroe has also dealt with misinformed people who rudely opine about how he contracted the virus: “Who fucked you? That’s how you got it, right?” people will say to him.

“You end up internalizing all these stereotypes about who gets HIV — that you were promiscuous, that you didn’t care about yourself, that you did something wrong,” says Smith. “You carry that in, and then you have to relearn: ‘No, I didn’t. This is just a health condition.’”

What HIV acceptance looks like and raising awareness

For those living with HIV, acceptance feels far away.

“You’re living under this threat of HIV and the threat that others find you threatening. It inhabits you socially and sexually,” Koester says. “People are hunkering down. Not putting themselves out there and having a mediocre quality of life. To have a sense of empowerment, you have to be legitimate and seen in the world and it’s hard to do that with the stigma that exists.”

Researchers say the path forward lies as much in conversation as in medicine.

Koester says she talks about HIV and PrEP anywhere she can, including in salons, cafes and restaurants. “Whenever I get into a cab with someone, I’m going to bring up HIV so the driver gets accustomed to hearing about it. … We have a long way to go in terms of exposure and awareness and every little bit helps.”

Part of this lies in increasing awareness through targeted marketing campaigns. PrEP is still profoundly misunderstood outside major urban centers, with uneven uptake among minority groups and usage gaps in the Bible Belt. And a 2022 U.S. survey found that 54.5 percent of people living with HIV didn’t know what U=U meant, and less than half of Americans agree that people living with HIV who are on proper medications cannot transmit the virus.

While eradicating stigma is slow, there is hope for acceptance.

Years after Jack’s diagnosis, in 2021, he told a man he was on a third date with that he was HIV-positive but undetectable. His date’s reply was almost casual:

“Oh — is that it? I thought you were going to say you had a boyfriend or something. I’m on PrEP. You’re fine.”

“It felt so good to hear him say that and accept me,” says Jack. “I was like, ‘This is my person. You’re my person.’” One year later, they got married.

Back in Florida, 19-year-old Cody Nester isn’t feeling this acceptance. He still scrolls past profiles that read “Only negative guys” and tries to ignore the hateful messages.

“It still hurts, but I know it’s coming from fear,” he says. “I wasn’t too informed about HIV before I got it. … When I got it, I really jumped into the rabbit hole and began to learn. I really do think [HIV and stigma] is because people are not knowledgeable. … When people don’t know details, they tend to get scared.”

Additional reporting by Nandika Chatterjee.

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