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Sebelius promises to collect LGBT data in health surveys

Advocates call for transparency in devising questions

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

Secretary of Health & Human Services Kathleen Sebelius committed on Tuesday to start the collection of LGBT data as part of federal health surveys, although she said the questions that would be used to gather the information must be market-tested before they’re made part of any questionnaire.

During a news conference at the White House, Sebelius said in response to a question from the Washington Blade that the Department of Health & Human Services “fully intend[s] to collect LGBT data” through federal surveys.

“So it is definitely a commitment,” Sebelius said. “We will be adding data questions to the national health surveys. And right now we are looking at developing a slew of questions, market-testing them, coming back and making sure we have the right way to solicit the information that we need.”

Sebelius said including LGBT questions on federal health surveys has been difficult because the federal government hasn’t engaged in such data collection before and hasn’t settled on the right way to ask such questions. The secretary asserted the Department of Health & Human Services is market-testing questions to make sure they’re worded in the right way to collect the necessary information.

“The problem is that it’s never been collected, and what our folks came back to us with is we have to figure out — and we’re working with providers and advocates right now to actually market-test the questions — how to ask questions in a way that they elicit accurate responses, because collecting data that doesn’t give an accurate picture is not very helpful in the first place,” Sebelius said. “And there has been so little attempt, either directly to consumers or to parents or to anybody else, to ask questions about LGBT health issues that we don’t even know how to ask them.”

Although Sebelius expressed a commitment to include LGBT data collection as part of federal health surveys, she didn’t offer a timeline for when this market testing would be complete or when the questions would be included on the surveys.

To facilitate a better picture of the health of LGBT Americans, advocates have been seeking the inclusion of questions related to sexual orientation and gender identity on major federal surveys, such as the National Health Interview Survey and the Behavioral Risk Factor Surveillance System.

To gather data on sexual orientation, a survey could ask whether someone identifies as lesbian, gay or bisexual. Another survey more focused on sexual health, such as an HIV survey, could ask about sexual behavior and whether the responder has had sex with someone of the same gender.

For gender identity, a survey could ask whether respondents identify as transgender; if someone has transitioned from one gender to another over the course of their lives; or ask about non-conformity, regardless of how the respondent identifies their gender.

Advocates are hoping that data obtained from asking these questions may help ascertain whether certain health problems affect LGBT people more frequently than others, such as mental health problems or alcohol and drug abuse.

Joe Solmonese, president of the Human Rights Campaign, praised Sebelius in a statement for expressing her commitment to including the questions on the surveys and said the change is needed to address LGBT health disparities.

“It has been repeatedly demonstrated — including in a major LGBT health report issued just months ago by the Institute of Medicine —that LGBT people experience significant health disparities and that we cannot fully understand those disparities and how to address them until major health studies ask about our community,” Solmonese said.

Solmonese was referring to the report from the non-governmental United States National Academy of Sciences’ Institute of Medicine Report, published March 31, which found that researchers have insufficient data on LGBT people in health studies, prompting a tendency to treat LGBT people as a single homogeneous group.

Darlene Nipper, deputy executive director of the National Gay & Lesbian Task Force, also commended Sebelius for making the commitment for LGBT data inclusion as a means to address health problems affecting LGBT people.

“There is an urgent need to address health disparities because LGBT lives literally hang in the balance,” Nipper said. “We’re pleased that HHS is moving forward on data collection for the LGBT community in federal health surveys. While not typically headline grabbers, LGBT data collection in federal surveys is critical to the ultimate well-being of our community.”

A number of LGBT advocates also called for greater transparency in the way that the Department of Health & Human Services devises the potential questions to obtain health data on the LGBT population.

Gary Gates, distinguished scholar at the Williams Institute at the University of California in Los Angeles, called the commitment from Sebelius “fantastic,” but said questions on sexual orientation and gender identity “need not start from scratch.”

“We know a great deal already about how to measure sexual orientation and some recent studies have also highlighted promising approaches to measuring gender identity,” Gates said. “HHS now has a real opportunity to develop an open and transparent process as they assess how to best utilize this body of research to inform how they achieve LGBT inclusion in their data collection. That process must be transparent and involve experts from both inside and outside of the government as well as experts from the LGBT community.”

Nipper made similar remarks on the need for openness in the way the LGBT-related questions for the health surveys are developed.

“We encourage the secretary to take this directive and turn it into action in a transparent process that includes experts from both inside and outside of the federal government to implement it effectively,” Nipper said. “The sooner this happens, the sooner initiatives like Healthy People and the National Prevention Strategy will be able to adequately address the many health needs of our community.”

The National Prevention Strategy, a comprehensive plan aimed at increasing the number of Americans who are healthy at every stage of their lives, was published last week by the Department of Health & Human Services’ National Prevention Council. The strategy recognizes that good health comes not just from quality medical care, but also from clean air and water, safe work sites and healthy foods.

A transcript of the exchange between the Blade and Sebelius follows:

Washington Blade: Madam Secretary, I have a question for you on a different topic. As I’m sure you know, the absence of nationwide data about the LGBT community’s health needs and disparities has been a problem. Organizations want government assistance to address problems. The government insists on data to back up these requests, but the government won’t collect data, so the LGBT community remains stymied.

It’s public knowledge that groups have been advocating with HHS to address the data collection issue — specific things like including LGBT questions on the National Health Interview Survey and the Behavioral Risk Factor Surveillance System.

You and the president have been advocates for evidence-based decision-making. What’s the holdup here?

Kathleen Sebelius: Well, actually, it’s a great question, and we fully intend to collect LGBT data. The problem is that it’s never been collected, and what our folks came back to us with is we have to figure out — and we’re working with providers and advocates right now to actually market-test the questions — how to ask questions in a way that they elicit accurate responses, because collecting data that doesn’t give an accurate picture is not very helpful in the first place. And there has been so little attempt, either directly to consumers or to parents or to anybody else, to ask questions about LGBT health issues that we don’t even know how to ask them.

So it is definitely a commitment. We will be adding data questions to the National Health Surveys. And right now we are looking at developing a slew of questions, market-testing them, coming back and making sure we have the right way to solicit the information that we need.

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Federal Government

Holiday week brings setbacks for Trump-Vance trans agenda

Federal courts begin to deliver end-of-year responses to lawsuits involving federal transgender healthcare policy.

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While many Americans took the week of Christmas to rest and relax, LGBTQ politics in the U.S. continued to shift. This week’s short recap of federal updates highlights two major blows to the Trump-Vance administration’s efforts to restrict gender-affirming care for minors.

19 states sue RFK Jr. to end gender-affirming care ban

New York Attorney General Letitia James announced on Tuesday that the NYAG’s office, along with 18 other states (and the District of Columbia), filed a lawsuit to stop U.S. Health and Human Services (HHS) Secretary Robert F. Kennedy Jr. from restricting gender-affirming care for minors.

In the press release, Attorney General James stressed that the push by the Trump-Vance administration’s crusade against the transgender community — specifically transgender youth — is a “clear overreach by the federal government” and relies on conservative and medically unvalidated practices to “punish providers who adhere to well-established, evidence-based care” that support gender-affirming care.

“At the core of this so-called declaration are real people: young people who need care, parents trying to support their children, and doctors who are simply following the best medical evidence available,” said Attorney General James. “Secretary Kennedy cannot unilaterally change medical standards by posting a document online, and no one should lose access to medically necessary health care because their federal government tried to interfere in decisions that belong in doctors’ offices. My office will always stand up for New Yorkers’ health, dignity, and right to make medical decisions free from intimidation.”

The lawsuit is a direct response to HHS’ Dec. 18 announcement that it will pursue regulatory changes that would make gender-affirming health care for transgender children more difficult, if not impossible, to access. It would also restrict federal funding for any hospital that does not comply with the directive. KFF, an independent source for health policy research, polling, and journalism, found that in 2023 federal funding covered nearly 45% of total spending on hospital care in the U.S.

The HHS directive stems directly from President Donald Trump’s Jan. 28 Executive Order, Protecting Children From Chemical and Surgical Mutilation, which formally establishes U.S. opposition to gender-affirming care and pledges to end federal funding for such treatments.

The American Medical Association, the nation’s largest and most influential physician organization, has repeatedly opposed measures like the one pushed by President Trump’s administration that restrict access to trans health care.

“The AMA supports public and private health insurance coverage for treatment of gender dysphoria and opposes the denial of health insurance based on sexual orientation or gender identity,” a statement on the AMA’s website reads. “Improving access to gender-affirming care is an important means of improving health outcomes for the transgender population.”

The lawsuit also names Oregon, Washington, California, Colorado, Connecticut, Delaware, the District of Columbia, Illinois, Maine, Maryland, Massachusetts, Michigan, Minnesota, New Mexico, Pennsylvania, Rhode Island, Vermont, and Wisconsin as having joined New York in the push against restricting gender-affirming care.

At the HHS news conference last Thursday, Jim O’Neill, deputy secretary of the department, asserted, “Men are men. Men can never become women. Women are women. Women can never become men.”

DOJ stopped from gaining health care records of trans youth

U.S. District Judge Cathy Bissoon blocked an attempt by the Department of Justice (DOJ) to gain “personally identifiable information about those minor transgender patients” from the University of Pittsburgh Medical Center (UPMC), saying the DOJ’s efforts “fly in the face of the Supreme Court.”

Journalist Chris Geidner originally reported the news on Dec. 25, highlighting that the Western District of Pennsylvania judge’s decision is a major blow to the Trump-Vance administration’s agenda to curtail transgender rights.

“[T]his Court joins the others in finding that the government’s demand for deeply private and personal patient information carries more than a whiff of ill intent,” Bissoon wrote in her ruling. “This is apparent from its rhetoric.”

Bissoon cited the DOJ’s “incendiary characterization” of trans youth care on the DOJ website as proof, which calls the practice politically motivated rather than medically sound and seeks to “…mutilate children in the service of a warped ideology.” This is despite the fact that a majority of gender-affirming care has nothing to do with surgery.

In United States v. Skrmetti, the Supreme Court ruled along party lines that states — namely Tennessee — have the right to pass legislation that can prohibit certain medical treatments for transgender minors, saying the law is not subject to heightened scrutiny under the Equal Protection Clause of the Fourteenth Amendment because it does not involve suspect categories like race, national origin, alienage, and religion, which would require the government to show the law serves a compelling interest and is narrowly tailored, sending decision-making power back to the states.

“The government cannot pick and choose the aspects of Skrmetti to honor, and which to ignore,” Judge Bissoon added.

The government argued unsuccessfully that the parents of the children whose records would have been made available to the DOJ “lacked standing” because the subpoena was directed at UPMC and that they did not respond in a timely manner. Bissoon rejected the timeliness argument in particular as “disingenuous.”

Bissoon, who was nominated to the bench by then-President Obama, is at least the fourth judge to reject the DOJ’s attempted intrusion into the health care of trans youth according to Geidner.

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Israel

A Wider Bridge to close

LGBTQ Jewish group said financial challenges prompted decision

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U.S. Rep. Debbie Wasserman Schultz (D-Fla.) speaks at the Capital Jewish Museum in D.C. on June 5, 2025, after A Wider Bridge honored her at its Pride event. A Wider Bridge has announced it will shut down. (Washington Blade photo by Michael K. Lavers)

A Wider Bridge on Friday announced it will shut down at the end of the month.

The group that “mobilizes the LGBTQ community to fight antisemitism and support Israel and its LGBTQ community” in a letter to supporters said financial challenges prompted the decision.

“After 15 years of building bridges between LGBTQ communities in North America and Israel, A Wider Bridge has made the difficult decision to wind down operations as of Dec. 31, 2025,” it reads.

“This decision comes after challenging financial realities despite our best efforts to secure sustainable funding. We deeply appreciate our supporters and partners who made this work possible.”

Arthur Slepian founded A Wider Bridge in 2010.

The organization in 2016 organized a reception at the National LGBTQ Task Force’s Creating Change Conference in Chicago that was to have featured to Israeli activists. More than 200 people who protested against A Wider Bridge forced the event’s cancellation.

A Wider Bridge in 2024 urged the Capital Pride Alliance and other Pride organizers to ensure Jewish people can safely participate in their events in response to an increase in antisemitic attacks after Hamas militants attacked Israel on Oct. 7, 2023.  

The Jewish Telegraphic Agency reported authorities in Vermont late last year charged Ethan Felson, who was A Wider Bridge’s then-executive director, with lewd and lascivious conduct after alleged sexual misconduct against a museum employee. Rabbi Denise Eger succeeded Felson as A Wider Bridge’s interim executive director.

A Wider Bridge in June honored U.S. Rep. Debbie Wasserman Schultz (D-Fla.) at its Pride event that took place at the Capital Jewish Museum in D.C. The event took place 15 days after a gunman killed two Israeli Embassy employees — Yaron Lischinsky and Sarah Milgrim — as they were leaving an event at the museum.

“Though we are winding down, this is not a time to back down. We recognize the deep importance of our mission and work amid attacks on Jewish people and LGBTQ people – and LGBTQ Jews at the intersection,” said A Wider Bridge in its letter. “Our board members remain committed to showing up in their individual capacities to represent queer Jews across diverse spaces — and we know our partners and supporters will continue to do the same.”

Editor’s note: Washington Blade International News Editor Michael K. Lavers traveled to Israel and Palestine with A Wider Bridge in 2016.

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The White House

‘Trump Rx’ plan includes sharp cuts to HIV drug prices

President made announcement on Friday

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President Donald Trump during his meeting on lowering drug prices through TrumpRx. (Washington Blade photo by Joe Reberkenny)

President Donald Trump met with leaders from some of the world’s largest pharmaceutical companies at the White House on Friday to announce his new “Trump Rx” plan and outline efforts to reduce medication costs for Americans.

During the roughly 47-minute meeting in the Roosevelt Room, Trump detailed his administration’s efforts to cut prescription drug prices and make medications more affordable for U.S. patients.

“Starting next year, American drug prices will come down fast, furious, and will soon be among the lowest in the developed world,” Trump said during the meeting. “For decades, Americans have been forced to pay the highest prices in the world for prescription drugs by far … We will get the lowest price of anyone in the world.”

Trump signed an executive order in May directing his administration “to do everything in its power to slash prescription drug prices for Americans while getting other countries to pay more.”

“This represents the greatest victory for patient affordability in the history of American health care, by far, and every single American will benefit,” he added.

Several pharmaceutical executives stood behind the president during the announcement, including Sanofi CEO Paul Hudson, Novartis CEO Vas Narasimhan, Genentech CEO Ashley Magargee, Boehringer Ingelheim (USA) CEO Jean-Michel Boers, Gilead Sciences CEO Dan O’Day, Bristol Myers Squibb General Counsel Cari Gallman, GSK CEO Emma Walmsley, Merck CEO Robert Davis, and Amgen Executive Vice President Peter Griffith.

Also in attendance were Health and Human Services Secretary Robert F. Kennedy Jr., Commerce Secretary Howard Lutnick, Centers for Medicare and Medicaid Services Administrator Mehmet Oz, and Food and Drug Administration Commissioner Marty Makary.

Under the Trump Rx plan, the administration outlined a series of proposed drug price changes across multiple companies and therapeutic areas. Among them were reductions for Amgen’s cholesterol-lowering drug repatha from $573 to $239; Bristol Myers Squibb’s HIV medication reyataz from $1,449 to $217; Boehringer Ingelheim’s type 2 diabetes medication jentadueto from $525 to $55; Genentech’s flu medication xofluza from $168 to $50; and Gilead Sciences’ hepatitis C medication epclusa from $24,920 to $2,425.

Additional reductions included several GSK inhalers — such as the asthma inhaler advair diskus 500/50, from $265 to $89 — Merck’s diabetes medication januvia from $330 to $100, Novartis’ multiple sclerosis medication mayzent from $9,987 to $1,137, and Sanofi’s blood thinner plavix from $756 to $16. Sanofi insulin products would also be capped at $35 per month’s supply.

These prices, however, would only be available to patients who purchase medications directly through TrumpRx. According to the program’s website, TrumpRx “connects patients directly with the best prices, increasing transparency, and cutting out costly third-party markups.”

Kennedy spoke after Trump, thanking the president for efforts to lower pharmaceutical costs in the U.S., where evidence has shown that drug prices — including both brand-name and generic medications — are nearly 2.78 times higher than prices in comparable countries. According to the Pharmaceutical Research and Manufacturers of America, roughly half of every dollar spent on brand-name drugs goes to entities that play no role in their research, development, or manufacturing.

“This is affordability in action,” Kennedy said. “We are reversing that trend and making sure that Americans can afford to get the life-saving solutions.”

Gilead CEO Dan O’Day also spoke about how the restructuring of drug costs under TrumpRx, combined with emerging technologies, could help reduce HIV transmission — a virus that, if untreated, can progress to AIDS. The LGBTQ community remains disproportionately affected by HIV.

“Thank you, Mr. President — you and the administration,” O’Day said. “I think this objective of achieving the commitment to affordability and future innovation is extraordinary … We just recently launched a new medicine that’s only given twice a year to prevent HIV, and we’re working with Secretary Kennedy and his entire team, as well as the State Department, as a part of your strategy to support ending the epidemic during your term.

“I’ve never been more optimistic about the innovation that exists across these companies and the impact this could have on America’s health and economy,” he added.

Trump interjected, asking, “And that’s working well with HIV?”

“Yes,” O’Day replied.

“It’s a big event,” Trump said.

“It literally prevents HIV almost 100 percent given twice a year,” O’Day responded.

A similar anti-HIV medication is currently prescribed more than injectable form mentioned by O’Day. PrEP, is a medication regimen proven to significantly reduce HIV infection rates for people at high risk. Without insurance, brand-name Truvada can cost roughly $2,000 per month, while a generic version costs about $60 per month.

Even when medication prices are reduced, PrEP access carries additional costs, including clinic and laboratory fees, office visits, required HIV and sexually transmitted infection testing, adherence services and counseling, and outreach to potentially eligible patients and providers.

According to a 2022 study, the annual total cost per person for PrEP — including medication and required clinical and laboratory monitoring — is approximately $12,000 to $13,000 per year.

The TrumpRx federal platform website is now live at TrumpRx.gov, but the program is not slated to begin offering reduced drug prices until January.

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