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HHS unveils plan to start data collection on LGBT health

Department will incorporate questions on sexual orientation into NHIS by 2013

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Secretary of Health & Human Services Kathleen Sebelius (Blade file photo by Michael Key)

The Department of Health & Human Services unveiled on Wednesday new details about plans to collect data on the LGBT population as part of federal health surveys.

According to a statement from the department, HHS will incorporate questions on sexual orientation into the National Health Interview Survey by 2013. Further, the department plans to hold a series of research roundtables with experts to determine the best way to collect data related to gender identity.

Secretary of Health & Human Services Kathleen Sebelius already announced last week that her department would start collecting health data on LGBT people during a news conference in response to a question from the Washington Blade. The information unveiled on Wednesday sheds greater light on the plan to start collecting this information.

In a statement, Sebelius emphasized that collecting health data on the LGBT population could lead to reduction of health disparities faced by the LGBT community.

“Health disparities have persistent and costly effects for minority communities, and the whole country,” Sebelius said. “Today we are taking critical steps toward ensuring the collection of useful national data on minority groups, including for the first time, LGBT populations. The data we will eventually collect in these efforts will serve as powerful tools and help us in our fight to end health disparities.”

According to a fact sheet from HHS, the administration has the authority to collect data on the LGBT population as part of the health care reform law passed by Congress last year, which allows the department the opportunity to collect demographic data to further improve understanding of health care disparities.

“In the past, identifying disparities and effectively monitoring efforts to reduce them has been limited by a lack of specificity, uniformity, and quality in data collection and reporting procedures,” the fact sheet states. “Consistent methods for collecting and reporting health data will help us better understand the nature of health problems in the LGBT community.”

The plan from HHS states that limited data on the LGBT community already shows the population is subject to certain health problems more than others. For example, gay and bisexual men make up more than half of new HIV infections in the United States each year; HIV infection among transgender women exceeds 25 percent nationwide; and lesbian and bisexual women are prone to receive less routine care than other women, including breast and cervical cancer screening.

The fact sheets made public on Wednesday outline the path under which the Obama administration plans to start collecting data on individuals based on their sexual orientation and gender identity:

* June to Dec. 2011 — Continue cognitive testing and begin field testing of sexual orientation data collection.

* Summer 2011 — Conduct first roundtable on gender identity data collection development. Complete initial development of sexual orientation data collection questionnaire.

* Winter 2011 — Conduct follow-up roundtable on gender identity data collection.

* Spring 2012 — Conduct and complete initial field testing of sexual orientation data collection. HHS Data Council presents a strategy to include gender identity data collection in HHS surveys.

* Winter 2012 — Conduct and complete large scale field test of sexual orientation data collection.

* 2013 — If the field test is successful, implement new data collection on sexual orientation into the full National Health Interview Survey data collection.

Gary Gates, distinguished scholar at the Williams Institute at University of California in Los Angeles, said the new details on data collection for LGBT people “solidifies the commitment that Secretary Sebelius made last week to provide more and better data” on LGBT health needs.

“As was clearly stated in the findings from the recent Institutes of Medicine report on LGBT health disparities, the need for more data is acute,” Gates said. “I urge HHS to move as quickly as possible to include sexual orientation and gender identity questions on the NHIS.”

Mara Keisling, executive director of the National Center for Transgender Equality, called the commitment from the Obama administration to collect data on the LGBT population “a big deal.”

“When the federal government starts to count us, we will have the proof of the health disparities we all know exist,” Keisling said. “With the data, advocacy for better health programs becomes possible, vital resources can be directed to our community, and better health for transgender people will follow.”

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Health

Too afraid to leave home: ICE’s toll on Latino HIV care

Heightened immigration enforcement in Minneapolis is disrupting treatment

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(Photo by Liam James Doyle for Uncloseted Media and Rewire News Group.)

Uncloseted Media published this article on March 3.

This story was produced in collaboration with Rewire News Group, a nonprofit publication reporting on reproductive and sexual health, rights and justice.

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 and CAMERON OAKES | For two weeks, Albé Sanchez didn’t leave their house in South Minneapolis.

“[I was] forced into survival mode,” Sanchez told Uncloseted Media and Rewire News Group (RNG). “I felt like there was an invisible wall [to the outside world] that I couldn’t cross unless I really wanted to put myself in a place where there was a chance that I might not be able to come back.”

Queer and Mexican American, Sanchez was afraid of being targeted by the Immigration and Customs Enforcement presence in their neighborhood, even though they are a U.S. citizen.

“Every day is a risk,” they say, adding that even if they have paperwork, if they fit the profile, they are a target, making it scary to go even to work or the grocery store.

Sanchez, a 30-year-old sexual health care educator, has been taking oral PrEP, the daily preventive medication for HIV, for over a decade. But the mounting stress of ICE raids has made it harder to keep up with dosing.

“A missed dose here and there pushed me to make the appointment [for something more sustainable],” they say.

Sanchez says they felt like somebody would have their back at their local clinic. It was only a 10-minute drive from where they worked, they knew its staff from previous visits and community outreach, and they could count on finding Spanish-speaking staff and providers of Latino heritage. But not everybody has had that same experience accessing care.

Since ICE’s Operation Metro Surge began in early December, an increasing number of Latino patients in Minnesota are delaying or canceling what can be lifesaving care for the prevention and treatment of HIV.

These findings are particularly alarming for Latino communities, who, as of 2023, are 72 percent more likely than the general U.S. population to be diagnosed with HIV. And while overall infections have decreased, cases among Latinos increased by 24 percent between 2010 and 2022.

“I’m very concerned that there is going to be a sharp uptick in transmission,” says Alex Palacios, a community health specialist in the Minneapolis area.

In a January 2026 declaration as part of a lawsuit seeking to end Operation Metro Surge in the days following Renee Nicole Good’s killing, the commissioner of the Minnesota Department of Health said HIV testing among Latino populations has “dropped dramatically” and that “although grantee staff continue to go into the community to promote and provide testing, people are not showing up.”

Local clinics are reporting the same thing. The Aliveness Project, a community wellness center in Minneapolis specializing in HIV care, told Uncloseted Media and RNG they have seen more than a 50 percent decrease in new clients. The clinic serves a large number of Latino and undocumented clients, and while it usually sees 750 people walk through their door each week, according to providers, it reported seeing 100 fewer people each week since December.

Red Door, Minnesota’s largest STI and HIV clinic, has had a “modest uptick” in no-shows and missed appointments since December.

What happens when treatment stops

Today, there are multiple medications available that work to prevent HIV and dozens that treat it once a person tests positive. Many people who consistently take their medication have such low levels of the virus that they can’t transmit it through sex. But becoming undetectable requires patients to stay on their medication; otherwise, the virus replicates and mutates, weakening the immune system and increasing the risk of life-threatening infections.

“If patients aren’t on their medicines consistently, HIV can learn about the medication and become resistant to them. When this happens, the medicine will not work for the patient, and the new resistant virus could potentially be passed on to others,” says George Froehle, a physician assistant and provider at Aliveness Project. “Medication adherence is one of the most important aspects of HIV care.”

To maintain care and prevent dangerous, untreatable strains from spreading in Minnesota, providers at Aliveness Project have begun delivering medication to patients when possible, offering telehealth when they can, and pausing routine lab work to limit in-person appointments.

“The most important thing we can do from a public health perspective is to keep people undetectable so they don’t transmit HIV,” Froehle says, adding that providers in other cities targeted by ICE will need to make plans for missed injection visits, pivot to telehealth and prepare their teams for the “trauma that can occur.”

Sanchez understands the risks of inconsistent treatment, which is why they opted for the injectable preventative medication.

“I have a lot of risk [to HIV in my community],” Sanchez says. “With so much uncertainty about the future and whether HIV care will remain stable, I realized I couldn’t let this opportunity pass.”

But injectable HIV treatments are commonly dosed at two weeks to six months apart, and the medication must be administered in a clinic — a setting many patients are avoiding, according to providers.

“They have a two-week window” to get their shots, according to Froehle, who added that because patients are afraid to come in person, they have had to transition people off of their injectable HIV treatments. This has caused patients to return to oral HIV treatments without the testing they would normally receive had ICE not been in Minneapolis. “[Oral treatments] weren’t super successful [for these patients] to begin with and that’s why they were on injectables.”

Oral HIV medications, too, must be taken consistently to work. In response, providers have urged patients to have their pills with them at all times in case they get deported or detained.

The caution is not unfounded. Federal immigration facilities have a history of denying adequate medical care to people living with HIV, despite internal standards that require them to comply. Since 2025, at least two men living with HIV have been denied access to their medication in a Brooklyn jail, according to lawsuits obtained by THE CITY. One man said he was only given his medication after his lips broke open and he developed an open pustule on his leg. And in January 2025, another man died of HIV complications while in ICE custody in Arizona.

Beyond being detained without proper medication, patients are at risk of being deported to countries with limited access to HIV care, like Honduras and Venezuela, experts say.

“A lot of men [from Venezuela] told me they left because it wasn’t safe to be gay there and because they struggled to access HIV care,” says Froehle. “It’s a little heartbreaking to see new folks not only face the threat of deportation, but to places where they didn’t feel safe medically or identity-wise.”

“Some of these patients will die in their home country,” says Anna Person, the chair of the HIV Medicine Association. “It’s a death sentence.”

A ‘cascading disaster’

While ICE’s presence is threatening the infrastructure of HIV care that Minneapolis has built over decades, experts say there has always been a blind spot in HIV care for the city’s Latino community.

Vincent Guilamo-Ramos, executive director of the Institute for Policy Solutions at the Johns Hopkins University of Nursing, describes HIV in Latino communities as a “cascading disaster,” the result of years of compounding inequities.

“There’s been an invisible crisis among Latinos that hasn’t gotten traction,” he says. “The numbers have consistently gone up in terms of new infections, while nationally they’ve gone down. … That should be a big alarm.”

Numbers are rising because structural barriers and stigma are preventing Latinos from receiving care. A 2022 report from the Centers for Disease Control and Prevention found that between 2018 and 2020, nearly 1 in 4 Hispanic people living with HIV reported experiencing discrimination in health care settings. Lack of representation among providers, language barriers and deep-rooted medical mistrust further complicate access to care, according to Guilamo-Ramos.

Beyond the medical system, stigma within Latino communities can be equally damaging. According to Human Rights Campaign data, more than 78 percent of Latino LGBTQ youth reported experiencing homophobia or transphobia within the Latino community in 2024.

Sanchez agrees that stigma and bias are already massive barriers to care, citing the strict gender norms and Catholic beliefs many Latino communities hold. They say ICE’s presence is threatening already delicate access to HIV care.

“This has caused so much damage to people,” Sanchez says. “Not being able to access your health care appointments is such a stab in the side. … Being able to navigate any of these things in normal circumstances already has so much difficulty to it.”

Palacios, who is Afro-Latine and living with HIV, says the heightened ICE presence is worsening barriers that have long undermined the Latino community’s access to HIV care.

“The horizon has always been stark and dim,” they say. “And this just feels like one more thing to address and to fight back against.”

Sliding backwards

Navigating HIV care is becoming more difficult across the board, as the federal government has decimated HIV funding, compromising decades of progress made in the fight against the virus since Donald Trump retook office just over a year ago.

In February 2026, three months into Operation Metro Surge, the Trump-Vance administration proposed slashing $600 million in HIV-related grants, targeting four blue states, including $42 million for Minnesota programs. A federal judge has temporarily blocked the cuts.

“This would completely decimate and gut all of our HIV prevention,” says Dylan Boyer, director of development at Aliveness Project. “That’s the reality that we live in.”

“We have all the tools, and yet we are staring down this rollback of infrastructure and research dollars, prevention efforts, treatment efforts, that are going to put us squarely back in the 1980s,” says Person, a national HIV expert who grew up in Minnesota. “[There] seems to be no other rationale for that besides cruelty, to be quite frank, since there’s no scientific reason for it.”

Repair and representation

Jenny Harding, director of advancement at a Minneapolis-area supportive housing program for people living with HIV, says that while ICE’s presence is lessening in the Twin Cities, the “damage is done.”

Person says that this mending will take time, especially between the medical community and patients, since HIV providers can have a “very fragile” relationship with their clients.

“It takes, sometimes, years to build that level of trust. And I do worry that folks are just going to say, ‘I don’t feel safe here anymore. The system does not have my best interest at heart, and I’m not coming back,’” she says. “This is not something that you can flip a switch and everything will go back to normal.”

“We need to hold our federal government accountable, particularly HHS, [and] we need to ensure that HIV funding remains intact,” Guilamo-Ramos says, adding that in order to lower rates of HIV in the Latino community, there should be more specialized efforts: such as bilingual and culturally aligned health care providers, community-based outreach programs co-located where risk is highest, trust-building initiatives to address medical mistrust, mobile clinics, and targeted programs to re-engage patients who have fallen out of care.

Aliveness Project’s patient numbers have increased in the last few weeks as the ICE operation has waned, but the clinic staff is keeping “a watchful eye” and is having “difficulty reaching folks who are understandably scared.”

“Our biggest focus right now is reconnecting with people through our outreach so no one has a lapse in their HIV medications or prevention care,” Boyer, of Aliveness Project, says.

For Sanchez, seeing providers who speak Spanish and are of Latin heritage at Aliveness Project built enough trust for them to reach out and make an appointment despite the risks. Sanchez feels optimistic about their new injectable prevention strategy with the support of their clinic.

“There’s many places where you can receive care here in the Twin Cities where you might not see your skin tone. … There’s still a lot of health care professionals that unfortunately carry bias. … Aliveness is the opposite of that,” they say. “Seeing that representation and knowing someone has that cultural context of how to meet you in moments of sensitivity, it’s crucial.”

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Fla. Senate passes ‘Anti-Diversity’ bill that could repeal local LGBTQ protections

Bipartisan coalition urges Florida House to reject ‘extremism’ measure

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The Florida Capitol (Washington Blade photo by Yariel Valdés González)

The Florida Senate on March 4 voted 25-11 to approve an “Anti-Diversity in Local Government” bill that critics have called a sweeping and extreme measure that, among other things, could repeal local LGBTQ rights protections.

According to Equality Florida, a statewide LGBTQ advocacy organization, if approved by the Florida House of Representatives and signed by Republican Gov. Ron DeSantis, the bill “would ban, repeal, and defund any local government programming, policy, or activity that provides ‘preferential treatment or special benefits’ or is designed or implemented’ with respect to race, color, sex, ethnicity, sexual orientation, or gender identity.”

In a March 4 statement, Equality Florda added that the bill would also threaten city and county officials with removal from office “for activities vaguely labeled as DEI,” with only limited exceptions.

The Florida House was scheduled to vote on the bill on Monday, March 9, with opponents hopeful that a broad coalition of both Democratic and Republican lawmakers would secure enough votes to defeat the bill.

“Once again, Gov. DeSantis and Florida lawmakers are advancing one of the most sweeping and extreme bills in the country — this time threatening decades of local progress supporting diverse communities, including the LGBTQ community,” said Equality Florida Senior Political Director Joe Saunders. “This legislation is a sledgehammer aimed at cities and counties that recognize and address the diversity of the people they serve,” he said.

Among the LGBTQ organizations that could be adversely impacted by the bill is the highly acclaimed Stonewall National Museum, Archives and Library located in Fort Lauderdale.

Robert Kesten, the Stonewall organization’s president and CEO, told the Washington Blade the organization receives some funding from Broward County, in which Fort Lauderdale is located, and the city of Fort Lauderdale has provided support by purchasing tables at some of the museum’s fundraising events.

“Based on this legislation, hose things would be gone,” he said. “We also are based in a government building. So, we don’t know what potential side effects that could have.” He noted that the building in question is owned by Broward County and leased by Fort Lauderdale, with the bill’s vaguely worded provision making it unclear whether Stonewall would be forced to leave its building.

“It’s unknown, and we’re really in unchartered waters,” he said.

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13 HIV/AIDS activists arrested on Capitol Hill

Protesters demanded full PEPFAR funding

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(Washington Blade photo by Michael Key)

U.S. Capitol Police on Thursday arrested 13 HIV/AIDS activists in the Cannon House Office Building Rotunda.

The activists — members of Housing Works, Health GAP, and the Treatment Action Group — joined former PEPFAR staffers in demanding full funding of the program that President George W. Bush created in 2003. They chanted “AIDS cuts kill, PEPFAR now!” and unfurled banners from the Rotunda’s second floor that read “Trump and (Office of Management and Budget Director Russell) Vought kill people with AIDS worldwide,” “Over 200,000 deaths since January 2025,” and “Hands off PEPFAR” before their arrest.

(Washington Blade video by Michael K. Lavers)

This protest is the latest against the Trump-Vance administration’s HIV/AIDS policies since it took office.

Secretary of State Marco Rubio on Jan. 28, 2025, issued a waiver that allowed PEPFAR and other “life-saving humanitarian assistance” programs to continue to operate during a freeze on nearly all U.S. foreign aid spending. HIV/AIDS service providers around the world with whom the Washington Blade has spoken say PEPFAR cuts and the loss of funding from the U.S. Agency for International Development, which officially closed on July 1, 2025, has severely impacted their work.

The State Department last September announced PEPFAR will distribute lenacapavir in countries with high prevalence rates. Zambia is among the nations in which the breakthrough HIV prevention drug has arrived.

The New York Times last summer reported Vought “apportioned” only $2.9 billion of $6 billion that Congress set aside for PEPFAR for fiscal year 2025. (PEPFAR in the coming fiscal year will use funds allocated in fiscal year 2024.)

Bipartisan opposition in the U.S. Senate prompted the Trump-Vance administration last July withdraw a proposal to cut $400 million from PEPFAR’s budget. Vought on Aug. 29, 2025, said he would use a “pocket rescission” to cancel $4.9 billion for HIV/AIDS prevention and global health programs and other foreign aid assistance initiatives that Congress had already approved.

The White House in January announced an expansion of the global gag rule to ban U.S. foreign aid for groups that promote “gender ideology.” President Ronald Reagan in 1985 implemented the original regulation, also known as the “Mexico City” policy, which bans U.S. foreign aid for groups that support abortion and/or offer abortion-related services. The Council for Global Equality and other groups say the expanded rule will adversely impact HIV prevention efforts around the world.

A press release that Housing Works and Health GAP issued on Thursday notes more than $977 million “in appropriated PEPFAR funding for HIV prevention and treatment was unspent by the end of fiscal year (FY) 2025 — triple amount unspent at the end of FY 2024.”

“Activists predict this backlog will worsen rapidly in FY 2026 unless Congress immediately reasserts its Constitutionally-mandated oversight authority,” notes the press release.

The press release also indicates funding for the Centers for Disease Control and Prevention’s PEPFAR programs “will run out” by April 1 because “only 45 percent of their FY26 funding has been transferred from the State Department.

“Unless funding is transferred immediately, CDC’s global HIV programs across sub-Saharan Africa, Asia and the Caribbean will grind to a halt,” notes the press release.

The activists demanded Trump, Vought, Rubio, and Congress do the following:

  • Activists are calling for full obligation of appropriated PEPFAR funds and rejection of growing political interference in global and domestic HIV programs 
  • Immediately release already-appropriated, unobligated PEPFAR funds 
  • Break the blackout on PEPFAR data, so Congress and people with HIV know how funding is being spent and can program based on data  
  • Activists are calling for full obligation of appropriated PEPFAR funds and rejection of growing political interference in global and domestic HIV programs.

“PEPFAR has saved more than 26 million lives and changed the trajectory of an epidemic,” said Housing Works CEO Charles King. “However, the Trump administration’s decision, over the objection of Republicans in Congress, to freeze PEPFAR funding has caused decades of progress to come undone and has been a death sentence for people with HIV relying on life-saving treatment. The U.S. must immediately restore PEPFAR funding and regain our standing in the global fight against HIV.”

King is among the activists who were arrested.

(Washington Blade video by Michael K. Lavers)

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