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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,Ā 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 healthĀ 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-governmentalĀ United States National Academy of Sciences’Ā 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.

ā€œWe 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,Ā was published last week by theĀ 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

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.

ā€œSuicide 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,ā€ they said in a statement. ā€œThese 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.ā€

“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.ā€

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.

ā€œI worry deeply that we will see more LGBTQ young people reach a crisis state and not have anyone there to help them through that,ā€ said Janson Wu, director of advocacy and government affairs at the Trevor Project. ā€œI 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.ā€

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.

ā€œLGBTQ+ stories matter,” Human Rights Campaign President Kelley Robinson said in a statement Tuesday. ā€œThey 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.ā€

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.

ā€œAll students benefit from a school climate that promotes acceptance and respect,ā€ said Karen Loewy, senior counsel and director of constitutional law practice at Lambda Legal.  ā€œEnsuring 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.ā€

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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U.S. Supreme Court

LGBTQ groups: SCOTUS case threatens coverage of preventative services beyond PrEP

Kennedy v. Braidwood oral arguments heard Monday

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HHS Secretary Robert F. Kennedy, Jr. (Washington Blade photo by Michael Key)

Following Monday’s oral arguments before the U.S. Supreme Court in Kennedy v. Braidwood Management, Inc., LGBTQ groups issued statements warning the case could imperil coverage for a broad swath of preventative services and medications beyond PrEP, which is used to reduce the risk of transmitting HIV through sex.

Plaintiffs brought the case to challenge a requirement that insurers and group health plans cover the drug regimen, arguing that the mandate “encourage[s] homosexual behavior, intravenous drug use, and sexual activity outside of marriage between one man and one woman.ā€

The case has been broadened, however, such that cancer screenings, heart disease medications, medications for infants, and several other preventive care services are in jeopardy, according to a press release that GLAAD, Lambda Legal, PrEP4All, Harvard Law’s Center for Health Law and Policy Innovation (CHLPI), and the Center for HIV Law and Policy (CHLP) released on Monday.

The Trump-Vance administration has argued the independent task force responsible for recommending which preventative services must be covered with no cost-sharing for patients is constitutional because the secretary of the U.S. Department of Health and Human Services can exercise veto power and fire members of the volunteer panel of national experts in disease prevention and evidence-based medicine.

While HHS secretaries have not exercised these powers since the Affordable Care Act was passed in 2010, Braidwood could mean Trump’s health secretary, Robert F. Kennedy Jr., takes a leading role in determining which services are included in the coverage mandate.

Roll Call notes the Supreme Court case comes as the administration has suspended grants to organizations that provide care for and research HIV while the ongoing restructuring of HHS has raised questions about whether the ā€œEnding the HIV Epidemicā€ begun under Trump’s first term will be continued.

ā€œToday’s Supreme Court hearing in the Braidwood case is a pivotal moment for the health and rights of all Americans,” said GLAAD President Sarah Kate Ellis. “This case, rooted in discriminatory objections to medical necessities like PrEP, can undermine efforts to end the HIV epidemic and also jeopardize access to essential services like cancer screenings and heart disease medications, disproportionately affecting LGBTQ people and communities of color.”

She added, “Religious exemptions should not be weaponized to erode healthcare protections and restrict medically necessary, life-saving preventative healthcare for every American.ā€

Lambda Legal HIV Project Director Jose Abrigo said, ā€œThe Braidwood case is about whether science or politics will guide our nation’s public health policy. Allowing ideological or religious objections to override scientific consensus would set a dangerous precedent. Although this case began with an attack on PrEP coverage, a critical HIV prevention tool, it would be a serious mistake to think this only affects LGBTQ people.”

“The real target is one of the pillars of the Affordable Care Act: The preventive services protections,” Abrigo said. “That includes cancer screenings, heart disease prevention, diabetes testing, and more. If the plaintiffs succeed, the consequences will be felt across every community in this country, by anyone who relies on preventive care to stay healthy.”

He continued, “What’s at stake is whether we will uphold the promise of affordable and accessible health care for all or allow a small group of ideologues to dismantle it for everyone. We as a country are only as healthy as our neighbors and an attack on one group’s rights is an attack on all.ā€

PrEP4All Executive Director Jeremiah Johnson said, “We are hopeful that the justices will maintain ACA protections for PrEP and other preventive services, however, advocates are poised to fight for access no matter the outcome.”

He continued, “Implementing cost-sharing  would have an enormous impact on all Americans, including LGBTQ+ individuals. Over 150 million people could suddenly find themselves having to dig deep into already strained household budgets to pay for care that they had previously received for free. Even small amounts of cost sharing lead to drops in access to preventive services.”

“For PrEP, just a $10 increase in the cost of medication doubled PrEP abandonment rates in a 2024 modeling study,” Johnson said. “Loss of PrEP access would be devastating with so much recent progress in reining in new HIV infections in the U.S. This would also be a particularly disappointing time to lose comprehensive coverage for PrEP with a once every six month injectable version set to be approved this summer.ā€

ā€œToday’s oral arguments in the Braidwood case underscore what is at stake for the health and well-being of millions of Americans,” said CHLPI Clinical Fellow Anu Dairkee. “This case is not just about legal technicalities — it is about whether people across the country will continue to have access to the preventive health services they need, without cost sharing, regardless of who they are or where they come from.”

She continued, “Since the Affordable Care Act’s preventive services provision took effect in 2010, Americans have benefited from a dramatic increase in the use of services that detect disease early, promote healthy living, and reduce long-term health costs. These benefits are rooted in the work of leading scientists and public health experts, including the U.S. Preventive Services Task Force, whose recommendations are based on rigorous, peer-reviewed evidence.”

“Any shift away from cost-free access to preventive care could have wide-ranging implications, potentially limiting access for those who are already navigating economic hardship and health disparities,” Dairkee said. “If Braidwood prevails, the consequences will be felt nationwide. We risk losing access to lifesaving screenings and preventive treatments that have become standard care over the past decade.”

“This case should serve as a wake-up call: Science, not politics, must guide our health care system,” she said. “The health of our nation depends on it.ā€

ā€œWe are grateful for the Justices who steadfastly centered constitutionality and didn’t allow a deadly political agenda to deter them from their job at hand,” said CHLP Staff Attorney Kae Greenberg. “While we won’t know the final decision until June, what we do know now is not having access to a full range of preventative healthcare is deadly for all of us, especially those who live at the intersections of racial, gender and economic injustice.”

“We are crystal clear how the efforts to undermine the ACA, of which this is a very clear attempt, fit part and parcel into an overall agenda to rollback so much of the ways our communities access dignity and justice,” he said. “Although the plaintiffs’ arguments today were cloaked in esoteric legal language, at it’s heart, this case revolves around the Christian Right’s objection to ‘supporting’ those who they do not agree with, and is simply going to result in people dying who would otherwise have lived long lives.”

“This is why CHLP is invested and continues in advocacy with our partners, many of whom are included here,” Greenberg said.

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