National
LGBTQ elder care facilities open nationwide, but discrimination persists
Advocates say seniors face challenges despite groundbreaking advances
Marsha Wetzel, an out lesbian, shared her life with her partner of 30 years, Judith Kahn, at the couple’s home in Illinois until Kahn died in 2013 of colon cancer.
As is the case with some same-sex couples who never married, Kahn’s family took legal possession of the couple’s home several years later, forcing Wetzel, who suffered from severe arthritis, to move into the Glen St. Andrew Living Community, a retirement and assisted living facility in Niles, Ill.
According to a lawsuit filed on her behalf in 2016 by the LGBTQ litigation group Lambda Legal, when word got out that Wetzel was a lesbian after she disclosed her sexual orientation to a fellow resident, she was called homophobic slurs, spat on, and assaulted on several occasions by other residents of the facility. The lawsuit, which later resulted in a court ruling in Wetzel’s favor, charged that officials at the Glen St. Andrew facility illegally failed to take action to prevent Wetzel from being subjected to abuse and threats by fellow residents and retaliated against her when she complained.
Lambda Legal announced one year ago, on Nov. 20, 2020, that Wetzel passed away at the age of 73 of natural causes after a landmark 2018 appeals court ruling in her favor affirmed that residential facilities such as the one in which she lived are legally responsible for the safety of tenant residents.
“Marsha spent the rest of her days in a senior living community where she was out and affirmed,” said Lambda Legal attorney Karen Loewy, who represented Wetzel in the lawsuit.
Advocates for LGBTQ seniors were hopeful that the 2018 U.S. Court of Appeals for the Seventh Circuit ruling in the Wetzel case would speed up the gradual but steady advances in the rights of LGBTQ elders in long-term care facilities and in society in general.
A short time later, the New York City-based national LGBTQ elder advocacy group SAGE expanded its programs providing cultural competency training for the nation’s long-term care residential facilities. And in some cities, including New York, Los Angeles, and San Francisco, LGBTQ specific retirement and long-term care facilities began to open to provide LGBTQ elders with a wide range of “wrap around” services in addition to a safe place to live.
But LGBTQ elder advocates were taken aback in October of this year when news surfaced that transgender U.S. Army veteran Lisa Oakley, 68, was denied placement in more than two-dozen long-term care facilities in Colorado in 2020 and earlier this year.
“When they found out I was transgender, a lot of the facilities didn’t want me,” Oakley told USA Today. “A lot of transgender people, I’m sure, face the same thing,” she said. “We’re humans, just like everybody else.”
Oakley told other media outlets her ordeal in trying to gain admission to a residential care facility began in October 2020, when she became unable to care for herself due to complications from diabetes. Her first choice was a facility in her hometown in rural Craig, Colo., where she had lived for the previous 25 years. She believes that facility turned her down because of her gender identity.
A social worker who assisted in Oakley’s applications for long-term care facilities said the facility in Craig said Oakley would have to be placed in a private room, which was at the time unavailable, “because she still has her ‘boy parts’ and cannot be placed with a woman” in a shared room.
Many other Colorado facilities to which Oakley applied for admission, according to social worker Cori Martin-Crawford, cited the COVID pandemic as the reason for not accepting new residents. But as COVID related restrictions began to subside, other facilities continued to deny Oakley admission.
With Martin-Crawford’s help, Oakley finally found a facility that is LGBTQ supportive in Grand Junction, Colo., which is nearly three hours away from her hometown of Craig, where she had hoped to remain.
LGBTQ activists expressed concern that the discrimination that Oakley faced took place in the state of Colorado, which has a state law that bans discrimination based on sexual orientation and gender identity. Experts familiar with long-term care facilities for older adults have said many private elder care facilities can get around state LGBTQ nondiscrimination laws by claiming other reasons for turning down an LGBTQ person.
Michael Adams, the CEO of SAGE, told the Blade that the wide range of programs and initiatives put in place by SAGE and other groups advocating for LGBTQ elders in recent years have resulted in significant changes in support of LGBTQ seniors.
“It is the case now that in almost all states there are one or more elder care facilities that have been trained through our SAGECare program,” Adams said. “But it’s nowhere near what it needs to be,” he said. “It needs to be that there are welcoming elder care facilities in every single community in this country” for LGBTQ elders.
Adams was referring to the SAGE program started recently called SAGECare that arranges for employees and other officials at elder care facilities throughout the country to receive LGBTQ competency training. The facilities that participate in the program are designated “SAGECare credentialed,” and are included in SAGE database lists available to LGBTQ elders looking for a safe facility in which to reside.
SAGE spokesperson Christina Da Costa provided the Blade with data showing there have been 136,975 professionals trained at a total of 617 SAGECare credentialed organizations nationwide. Out of 617 organizations, 172 are residential communities. Also, out of the total of 617 are 167 Area Agencies on Aging, Aging and Disability Resource Centers, Senior Centers, and senior Ombudsman offices.
Da Costa said 278 of the credentialed entities that have received the SAGECare training throughout the country are “other aging focused nonprofit and for-profit businesses.”
According to SAGE, there are 12 SAGECare credentialed elder care facilities or service providers operating in the D.C. metropolitan area, with two located in D.C. One of the D.C. facilities is Ingleside at Rock Creek, located in Northwest D.C., which is a residential facility. The other is Options for Senior America, a company that provides in-home care services for seniors, including seniors living in D.C.
A SAGE list of the D.C.-area SAGECare credentialed facilities shows that three are in Rockville, Md.; two are in Gaithersburg, Md.; and one each are in Bethesda, Md.; Arlington, Va.; and Alexandria, Va. The list shows that one of them that provides services to elders in the D.C. area is based in North Carolina.
SAGE has a separate list of the 15 elder care residential facilities in the U.S. created specifically to serve LGBTQ residents.
None are in D.C., Maryland, or Virginia. However, SAGE says it has been working in cooperation with Mary’s House for Older Adults, a D.C.-based LGBTQ organization that advocates for LGBTQ seniors and is in the process of opening LGBTQ elder residential facilities in D.C. and others in the surrounding suburbs.
Mary’s House founder and CEO Dr. Imani Woody couldn’t immediately be reached to determine when the organization expects to open its first residential facility.
While a residential LGBTQ elder facility has yet to open in the D.C. area, activists note that in addition to Mary’s House, services and amenities for LGBTQ elders in the area are currently being provided by the D.C. Center for the LGBT Community and Whitman-Walker Health, the LGBTQ supportive health center, which also has a legal services branch.
Adams of SAGE said the Los Angeles LGBTQ Center opened the nation’s first LGBTQ elder residential facility over eight years ago called Triangle Square. He said the L.A. Center opened a second LGBTQ elder residential facility a short time later. And this week, the L.A. Center announced it has opened a third LGBTQ elder residential facility in Hollywood that is part of a larger “intergenerational campus” that will bring together LGBTQ seniors and LGBTQ youth.
SAGE, meanwhile, operates two LGBTQ elder long-term care residential facilities in New York City, one in Brooklyn called the Stonewall House and one in the Bronx called Pride House.
The other U.S. cities with LGBTQ elder residential facilities include: Philadelphia, Minneapolis, Chicago, Cleveland, San Francisco (which has two such facilities), San Diego, Houston, Fort Lauderdale, and Islip, N.Y.
Adams said the LGBTQ elder residential facilities range in size, with the largest – New York’s Stonewall House – having 143 apartments that can accommodate 200 residents. He said others vary from 40 or 50 residential units to 120.
Advocates for LGBTQ elders point to what they consider another important breakthrough for LGBTQ elders this year in the release of a joint SAGE-Human Rights Campaign Long-Term Care Equality Index report for 2021. Adams said the report is the first of what could become an annual report and rating and scorecard for long-term care elder residential facilities and other elder facilities.
The 2021 report includes a self-reporting assessment of elder care facilities that the facilities themselves completed through a questionnaire in which many disclosed they have LGBTQ nondiscrimination policies for elders around admission to the facility and for practices by staff for those residing in their facilities.
The report includes a chart showing that 158 elder care facilities in 31 states responded positively to the outreach to them by organizers of the Long-Term Care Equality Index.
“We are thrilled to be working with SAGE and to be working with the Human Rights Campaign who are developing the Long-Term Care Equality Index,” said Nii-Quartelai Quartey, who serves as senior adviser and LGBTQ liaison for the American Association of Retired Persons or AARP.
“There is a great deal of work that we’re doing in the area of LGBTQ older adults nationwide,” Quartey told the Blade. “And AARP has been engaged with the LGBTQ community nationwide for many years now,” he said.
“In recent years, we’ve turned up the volume in working more closely with organizations like SAGE and Lambda Legal and the Victory Fund Institute, the Center for Black Equity, the National Queer Asian Pacific Islander Alliance, and the Hispanic Federation.”
According to Quartey, a recent AARP study of LGBTQ elders called Maintaining Dignity shows that longstanding concerns of discrimination remain despite the many advances in support for LGBTQ seniors in recent years.
He said a survey that was part of the study found that 67 percent of the LGBTQ elders who responded, “were concerned about neglect in a long-term care setting.” Over 60 percent feared verbal or physical harassment in a long-term care setting and over half “felt forced to hide or deny their identity” as an LGBTQ person, Quartey said.
Another recent survey of LGBTQ elders conducted by SAGE asking them how they feel about the use of the word “queer” in descriptions of LGBTQ people yielded findings that came as a surprise to some, according to Adams. A large majority of those surveyed from across the country said they are “comfortable at this point using that word and reclaiming that word, which is different from what we had heard historically,” Adams said.
He said in response to those findings SAGE will now as an organization gradually shift to using the term LGBTQ instead of its past practice of using LGBT.
Although Congress has yet to pass the Equality Act, last year under the Trump Administration, Congress acted in a rare bipartisan way to approve the required five-year reauthorization of the U.S. Older Americans Act with new language supportive of LGBTQ older adults. President Trump signed the legislation.
The language includes a mandate for outreach to and reporting about services provided to LGBTQ older adults in federally funded programs. It also opens the way for LGBTQ older adults to be designated in a category of “greatest social need.” Under that category, older adults receive a higher priority in the allocation of resources by the federal government.
“We’ve come a long way, but we still have a way to go to get over the finish line,” said the AARP’s Quartey. “And aside from passing legislation federally and on the state and local level, we absolutely need to continue the hard work of changing hearts and minds,” he said.
Longtime gay activist and writer Brian McNaught, whose latest book, “On Being Gay and Gray – Our Stories, Gifts, and the Meaning of Our Lives,” was just released, says his own very informal survey of LGBTQ elders found there is a need for intimacy that may be too controversial for the establishment LGBTQ elder groups.
“I’m a SAGE volunteer and the 81-year-old man with whom I was working after his husband of 47 years died, said after his grieving process, ‘I want to be hugged and kissed. Does that make me a bad person?’”
McNaught told the Blade he assured the man those feelings do not make him a bad person. McNaught said the man’s comment prompted him to conduct further research, in which he found that some gay male elders in the Fort Lauderdale, Fla., area who often need assisted living support would like to patronize gay bathhouses or seek the services of an escort agency. He said he determined that any LGBTQ elder group providing such services would trigger “a huge uproar of protests” and most likely a loss of funding.
“We don’t want to talk about sexuality and aging,” McNaught said.
The White House
As house Democrats release Epstein photos, Garcia continues to demand DOJ transparency
Blade this week sat down with gay House Oversight Committee ranking member
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.

“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.”





(Photo courtesy of the U.S. House Oversight Committee)
The White House
White House deadnames highest-ranking transgender official
Rachel Levine’s portrait altered at HHS
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.

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.”
Health
The harsh truth about HIV phobia in gay dating
HIV and stigma remain baked into queer dating culture
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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Congress5 days agoMarkey reintroduces International Human Rights Act in Senate
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Egypt4 days agoIran, Egypt object to playing in Seattle World Cup ‘Pride Match’
