National
Sebelius promises to collect LGBT data in health surveys
Advocates call for transparency in devising questions
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.
National
Medical groups file lawsuit over Trump deletion of health information
Crucial datasets included LGBTQ, HIV resources
Nine private medical and public health advocacy organizations, including two from D.C., filed a lawsuit on May 20 in federal court in Seattle challenging what it calls the U.S. Department of Health and Human Services’s illegal deletion of dozens or more of its webpages containing health related information, including HIV information.
The lawsuit, filed in the United States District Court for the Western District of Washington, names as defendants Robert F. Kennedy Jr., secretary of the Department of Health and Human Services (HHS) and HHS itself, and several agencies operating under HHS and its directors, including the Centers for Disease Control and Prevention, the National Institutes of Health, and the Food and Drug Administration.
“This action challenges the widespread deletion of public health resources from federal agencies,” the lawsuit states. “Dozens (if not more) of taxpayer-funded webpages, databases, and other crucial resources have vanished since January 20, 2025, leaving doctors, nurses, researchers, and the public scrambling for information,” it says.
“These actions have undermined the longstanding, congressionally mandated regime; irreparably harmed Plaintiffs and others who rely on these federal resources; and put the nation’s public health infrastructure in unnecessary jeopardy,” the lawsuit continues.
It adds, “The removal of public health resources was apparently prompted by two recent executive orders – one focused on ‘gender ideology’ and the other targeting diversity, equity, and inclusion (‘DEI’) programs. Defendants implemented these executive orders in a haphazard manner that resulted in the deletion (inadvertent or otherwise) of health-related websites and databases, including information related to pregnancy risks, public health datasets, information about opioid-use disorder, and many other valuable resources.”
The lawsuit does not mention that it was President Donald Trump who issued the two executive orders in question.
A White House spokesperson couldn’t immediately be reached for comment on the lawsuit.
While not mentioning Trump by name, the lawsuit names as defendants in addition to HHS Secretary Robert Kennedy Jr., Matthew Buzzelli, acting director of the Centers for Disease Control and Prevention; Jay Bhattacharya, director of the National Institutes of Health; Martin Makary, commissioner of the Food and Drug Administration; Thomas Engels, administrator of the Health Resources and Services Administration; and Charles Ezell, acting director of the Office of Personnel Management.
The 44-page lawsuit complaint includes an addendum with a chart showing the titles or descriptions of 49 “affected resource” website pages that it says were deleted because of the executive orders. The chart shows that just four of the sites were restored after initially being deleted.
Of the 49 sites, 15 addressed LGBTQ-related health issues and six others addressed HIV issues, according to the chart.
“The unannounced and unprecedented deletion of these federal webpages and datasets came as a shock to the medical and scientific communities, which had come to rely on them to monitor and respond to disease outbreaks, assist physicians and other clinicians in daily care, and inform the public about a wide range of healthcare issues,” the lawsuit states.
“Health professionals, nonprofit organizations, and state and local authorities used the websites and datasets daily in care for their patients, to provide resources to their communities, and promote public health,” it says.
Jose Zuniga, president and CEO of the International Association of Providers of AIDS Care (IAPAC), one of the organizations that signed on as a plaintiff in the lawsuit, said in a statement that the deleted information from the HHS websites “includes essential information about LGBTQ+ health, gender and reproductive rights, clinical trial data, Mpox and other vaccine guidance and HIV prevention resources.”
Zuniga added, “IAPAC champions evidence-based, data-informed HIV responses and we reject ideologically driven efforts that undermine public health and erase marginalized communities.”
Lisa Amore, a spokesperson for Whitman-Walker Health, D.C.’s largest LGBTQ supportive health services provider, also expressed concern about the potential impact of the HHS website deletions.
“As the region’s leader in HIV care and prevention, Whitman-Walker Health relies on scientific data to help us drive our resources and measure our successes,” Amore said in response to a request for comment from the Washington Blade.
“The District of Columbia has made great strides in the fight against HIV,” Amore said. “But the removal of public facing information from the HHS website makes our collective work much harder and will set HIV care and prevention backward,” she said.
The lawsuit calls on the court to issue a declaratory judgement that the “deletion of public health webpages and resources is unlawful and invalid” and to issue a preliminary or permanent injunction ordering government officials named as defendants in the lawsuit “to restore the public health webpages and resources that have been deleted and to maintain their web domains in accordance with their statutory duties.”
It also calls on the court to require defendant government officials to “file a status report with the Court within twenty-four hours of entry of a preliminary injunction, and at regular intervals, thereafter, confirming compliance with these orders.”
The health organizations that joined the lawsuit as plaintiffs include the Washington State Medical Association, Washington State Nurses Association, Washington Chapter of the American Academy of Pediatrics, Academy Health, Association of Nurses in AIDS Care, Fast-Track Cities Institute, International Association of Providers of AIDS Care, National LGBT Cancer Network, and Vermont Medical Society.
The Fast-Track Cities Institute and International Association of Providers of AIDS Care are based in D.C.
U.S. Federal Courts
Federal judge scraps trans-inclusive workplace discrimination protections
Ruling appears to contradict US Supreme Court precedent
Judge Matthew Kacsmaryk of the U.S. District Court for the Northern District of Texas has struck down guidelines by the U.S. Equal Employment Opportunity Commission designed to protect against workplace harassment based on gender identity and sexual orientation.
The EEOC in April 2024 updated its guidelines to comply with the U.S. Supreme Court’s ruling in Bostock v. Clayton County (2020), which determined that discrimination against transgender people constituted sex-based discrimination as proscribed under Title VII of the Civil Rights Act of 1964.
To ensure compliance with the law, the agency recommended that employers honor their employees’ preferred pronouns while granting them access to bathrooms and allowing them to wear dress code-compliant clothing that aligns with their gender identities.
While the the guidelines are not legally binding, Kacsmaryk ruled that their issuance created “mandatory standards” exceeding the EEOC’s statutory authority that were “inconsistent with the text, history, and tradition of Title VII and recent Supreme Court precedent.”
“Title VII does not require employers or courts to blind themselves to the biological differences between men and women,” he wrote in the opinion.
The case, which was brought by the conservative think tank behind Project 2025, the Heritage Foundation, presents the greatest setback for LGBTQ inclusive workplace protections since President Donald Trump’s issuance of an executive order on the first day of his second term directing U.S. federal agencies to recognize only two genders as determined by birth sex.
Last month, top Democrats from both chambers of Congress reintroduced the Equality Act, which would codify LGBTQ-inclusive protections against discrimination into federal law, covering employment as well as areas like housing and jury service.
The White House
Trump travels to Middle East countries with death penalty for homosexuality
President traveled to Saudi Arabia, Qatar, and United Arab Emirates
Homosexuality remains punishable by death in two of the three Middle East countries that President Donald Trump visited last week.
Saudi Arabia and Qatar are among the handful of countries in which anyone found guilty of engaging in consensual same-sex sexual relations could face the death penalty.
Trump was in Saudi Arabia from May 13-14. He traveled to Qatar on May 14.
“The law prohibited consensual same-sex sexual conduct between men but did not explicitly prohibit same-sex sexual relations between women,” notes the State Department’s 2023 human rights report, referring specifically to Qatar’s criminalization law. “The law was not systematically enforced. A man convicted of having consensual same-sex sexual relations could receive a sentence of seven years in prison. Under sharia, homosexuality was punishable by death; there were no reports of executions for this reason.”
Trump on May 15 arrived in Abu Dhabi, the capital of the United Arab Emirates.
The State Department’s 2023 human rights report notes the “penalty for individuals who engaged in ‘consensual sodomy with a man'” in the country “was a minimum prison sentence of six months if the individual’s partner or guardian filed a complaint.”
“There were no known reports of arrests or prosecutions for consensual same-sex sexual conduct. LGBTQI+ identity, real or perceived, could be deemed an act against ‘decency or public morality,’ but there were no reports during the year of persons prosecuted under these provisions,” reads the report.
The report notes Emirati law also criminalizes “men who dressed as women or entered a place designated for women while ‘disguised’ as a woman.” Anyone found guilty could face up to a year in prison and a fine of up to 10,000 dirhams ($2,722.60.)
Trump returned to the U.S. on May 16.
The White House notes Trump during the trip secured more than $2 trillion “in investment agreements with Middle Eastern nations ($200 billion with the United Arab Emirates, $600 billion with Saudi Arabia, and $1.2 trillion with Qatar) for a more safe and prosperous future.”
Former President Joe Biden traveled to Saudi Arabia in 2022.
Saudi Arabia is scheduled to host the 2034 World Cup. The 2022 World Cup took place in Qatar.
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