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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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U.S. Federal Courts

Second federal lawsuit filed against White House passport policy

Two of seven plaintiffs live in Md.

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Lambda Legal on April 25 filed a federal lawsuit on behalf of seven transgender and nonbinary people who are challenging the Trump-Vance administration’s passport policy.

The lawsuit, which Lambda Legal filed in U.S. District Court for the District of Maryland in Baltimore, alleges the policy that bans the State Department from issuing passports with “X” gender markers “has caused and is causing grave and immediate harm to transgender people like plaintiffs, in violation of their constitutional rights to equal protection.”

Two of the seven plaintiffs — Jill Tran and Peter Poe — live in Maryland. The State Department, Secretary of State Marco Rubio, and the federal government are defendants.

“The discriminatory passport policy exposes transgender U.S. citizens to harassment, abuse, and discrimination, in some cases endangering them abroad or preventing them from traveling, by forcing them to use identification documents that share private information against their wishes,” said Lambda Legal in a press release.

Zander Schlacter, a New York-based textile artist and designer, is the lead plaintiff.

The lawsuit notes he legally changed his name and gender in New York.

Schlacter less than a week before President Donald Trump’s inauguration “sent an expedited application to update his legal name on his passport, using form DS-5504.”

Trump once he took office signed an executive order that banned the State Department from issuing passports with “X” gender markers. The lawsuit notes Schlacter received his new passport in February.

“The passport has his correct legal name, but now has an incorrect sex marker of ‘F’ or ‘female,'” notes the lawsuit. “Mr. Schlacter also received a letter from the State Department notifying him that ‘the date of birth, place of birth, name, or sex was corrected on your passport application,’ with ‘sex’ circled in red. The stated reason was ‘to correct your information to show your biological sex at birth.'”

“I, like many transgender people, experience fear of harassment or violence when moving through public spaces, especially where a photo ID is required,” said Schlacter in the press release that announced the lawsuit. “My safety is further at risk because of my inaccurate passport. I am unwilling to subject myself and my family to the threat of harassment and discrimination at the hands of border officials or anyone who views my passport.”

Former Secretary of State Antony Blinken in June 2021 announced the State Department would begin to issue gender-neutral passports and documents for American citizens who were born overseas.

Dana Zzyym, an intersex U.S. Navy veteran who identifies as nonbinary, in 2015 filed a federal lawsuit against the State Department after it denied their application for a passport with an “X” gender marker. Zzyym in October 2021 received the first gender-neutral American passport.

Lambda Legal represented Zzyym.

The State Department policy took effect on April 11, 2022.

Trump signed his executive order shortly after he took office in January. Germany, Denmark, Finland, and the Netherlands are among the countries that have issued travel advisories for trans and nonbinary people who plan to visit the U.S.

A federal judge in Boston earlier this month issued a preliminary injunction against the executive order.  The American Civil Liberties Union filed the lawsuit on behalf of seven trans and nonbinary people.

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Federal Government

HHS to retire 988 crisis lifeline for LGBTQ youth

Trevor Project warns the move will ‘put their lives at risk’

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Robert F. Kennedy, Jr. appears on HBO's "Real Time with Bill Maher" in April 2024. (Screen capture via YouTube)

The U.S. Department of Health and Human Services is planning to retire the national 988 crisis lifeline for LGBTQ youth on Oct. 1, according to a preliminary budget document obtained by the Washington Post.

Introduced during the Biden-Harris administration in 2022, the hotline connects callers with counselors who are trained to work with this population, who are four times likelier to attempt suicide than their cisgender or heterosexual counterparts.

“Suicide prevention is about risk, not identity,” said Jaymes Black, CEO of the Trevor Project, which provides emergency crisis support for LGBTQ youth and has contracted with HHS to take calls routed through 988.

“Ending the 988 Suicide and Crisis Lifeline’s LGBTQ+ youth specialized services will not just strip away access from millions of LGBTQ+ kids and teens — it will put their lives at risk,” they said in a statement. “These programs were implemented to address a proven, unprecedented, and ongoing mental health crisis among our nation’s young people with strong bipartisan support in Congress and signed into law by President Trump himself.”

“I want to be clear to all LGBTQ+ young people: This news, while upsetting, is not final,” Black said. “And regardless of federal funding shifts, the Trevor Project remains available 24/7 for anyone who needs us, just as we always have.”

The service for LGBTQ youth has received 1.3 million calls, texts, or chats since its debut, with an average of 2,100 contacts per day in February.

“I worry deeply that we will see more LGBTQ young people reach a crisis state and not have anyone there to help them through that,” said Janson Wu, director of advocacy and government affairs at the Trevor Project. “I worry that LGBTQ young people will reach out to 988 and not receive a compassionate and welcoming voice on the other end — and that will only deepen their crisis.”

Under Trump’s HHS secretary, Robert F. Kennedy, Jr., the agency’s departments and divisions have experienced drastic cuts, with a planned reduction in force of 20,000 full-time employees. The Substance Abuse and Mental Health Services Administration has been sunset and mental health services consolidated into the newly formed Administration for a Healthy America.

The budget document reveals, per Mother Jones, “further sweeping cuts to HHS, including a 40 percent budget cut to the National Institutes of Health; elimination of funding for Head Start, the early childhood education program for low-income families; and a 44 percent funding cut to the Centers for Disease Control, including all the agency’s chronic disease programs.”

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U.S. Supreme Court

Supreme Court hears oral arguments in LGBTQ education case

Mahmoud v. Taylor plaintiffs argue for right to opt-out of LGBTQ inclusive lessons

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U.S. Supreme Court (Washington Blade photo by Michael Key)

The U.S. Supreme Court on Tuesday heard oral arguments in Mahmoud v. Taylor, a case about whether Montgomery County, Md., public schools violated the First Amendment rights of parents by not providing them an opportunity to opt their children out of reading storybooks that were part of an LGBTQ-inclusive literacy curriculum.

The school district voted in early 2022 to allow books featuring LGBTQ characters in elementary school language arts classes. When the county announced that parents would not be able to excuse their kids from these lessons, they sued on the grounds that their freedom to exercise the teachings of their Muslim, Jewish, and Christian faiths had been infringed.

The lower federal courts declined to compel the district to temporarily provide advance notice and an opportunity to opt-out of the LGBTQ inclusive curricula, and the 4th U.S. Circuit Court of Appeals determined that the parents had not shown that exposure to the storybooks compelled them to violate their religion.

“LGBTQ+ stories matter,” Human Rights Campaign President Kelley Robinson said in a statement Tuesday. “They matter so students can see themselves and their families in the books they read — so they can know they’re not alone. And they matter for all students who need to learn about the world around them and understand that while we may all be different, we all deserve to be valued and loved.”

She added, “All students lose when we limit what they can learn, what they can read, and what their teachers can say. The Supreme Court should reject this attempt to silence our educators and ban our stories.”

GLAD Law, NCLR, Family Equality, and COLAGE submitted a 40-page amicus brief on April 9, which argued the storybooks “fit squarely” within the district’s language arts curriculum, the petitioners challenging the materials incorrectly characterized them as “specialized curriculum,” and that their request for a “mandated notice-and-opt-out requirement” threatens “to sweep far more broadly.”

Lambda Legal, the Leadership Conference on Civil and Human Rights, PFLAG, and the National Women’s Law Center announced their submission of a 31-page amicus brief in a press release on April 11.

“All students benefit from a school climate that promotes acceptance and respect,” said Karen Loewy, senior counsel and director of constitutional law practice at Lambda Legal.  “Ensuring that students can see themselves in the curriculum and learn about students who are different is critical for creating a positive school environment. This is particularly crucial for LGBTQ+ students and students with LGBTQ+ family members who already face unique challenges.”

The organizations’ brief cited extensive social science research pointing to the benefits of LGBTQ-inclusive instruction like “age-appropriate storybooks featuring diverse families and identities” benefits all students regardless of their identities.

Also weighing in with amici briefs on behalf of Montgomery County Public Schools were the National Education Association, the ACLU, and the American Psychological Association.

Those writing in support of the parents challenging the district’s policy included the Center for American Liberty, the Manhattan Institute, Parents Defending Education, the Alliance Defending Freedom, the Trump-Vance administration’s U.S. Department of Justice, and a coalition of Republican members of Congress.

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