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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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The White House

Four states to ignore new Title IX rules protecting transgender students

Biden administration last Friday released final regulations

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March for Queer and Trans Youth Autonomy in D.C. in 2023. (Washington Blade photo by Michael Key)

BY ERIN REED | Last Friday, the Biden administration released its final Title IX rules, which include protections for LGBTQ students by clarifying that Title IX forbids discrimination based on sexual orientation and gender identity. 

The rule change could have a significant impact as it would supersede bathroom bans and other discriminatory policies that have become increasingly common in Republican states within the U.S. 

As of Thursday morning, however, officials in at least four states — Oklahoma, Louisiana, Florida, and South Carolina — have directed schools to ignore the regulations, potentially setting up a federal showdown that may ultimately end up in a protracted court battle in the lead-up to the 2024 elections.

Louisiana State Superintendent of Education Cade Brumley was the first to respond, decrying the fact that the new Title IX regulations could block teachers and other students from exercising what has been dubbed by some a “right to bully” transgender students by using their old names and pronouns intentionally. 

Asserting that Title IX law does not protect trans and queer students, Brumley states that schools “should not alter policies or procedures at this time.” Critically, several courts have ruled that trans and queer students are protected by Title IX, including the 4th U.S. Circuit Court of Appeals in a recent case in West Virginia.

In South Carolina, Schools Supt. Ellen Weaver wrote in a letter that providing protections for trans and LGBTQ students under Title IX “would rescind 50 years of progress and equality of opportunity by putting girls and women at a disadvantage in the educational arena,” apparently leaving trans kids out of her definition of those who deserve progress and equality of opportunity. 

She then directed schools to ignore the new directive while waiting for court challenges. While South Carolina does not have a bathroom ban or statewide “Don’t Say Gay or Trans” law, such bills continue to be proposed in the state.

Responding to the South Carolina letter, Chase Glenn of Alliance For Full Acceptance stated, “While Supt. Weaver may not personally support the rights of LGBTQ+ students, she has the responsibility as the top school leader in our state to ensure that all students have equal rights and protections, and a safe place to learn and be themselves. The flagrant disregard shown for the Title IX rule tells me that our superintendent unfortunately does not have the best interests of all students in mind.”

Florida Education Commissioner Manny Diaz also joined in instructing schools not to implement Title IX regulations. In a letter issued to area schools, Diaz stated that the new Title IX regulations were tantamount to “gaslighting the country into believing that biological sex no longer has any meaning.” 

Governor Ron DeSantis approved of the letter and stated that Florida “will not comply.” Florida has notably been the site of some of the most viciously anti-queer and anti-trans legislation in recent history, including a “Don’t Say Gay or Trans” law that was used to force a trans female teacher to go by “Mr.”

State Education Supt. Ryan Walters of Oklahoma was the latest to echo similar sentiments. Walters has recently appointed the right-wing media figure Chaya Raichik of Libs of TikTok to an advisory role “to improve school safety,” and notably, Raichik has posed proudly with papers accusing her of instigating bomb threats with her incendiary posts about LGBTQ people in classrooms.

The Title IX policies have been universally applauded by large LGBTQ rights organizations in the U.S. Lambda Legal, a key figure in fighting anti-LGBTQ legislation nationwide, said that the regulations “clearly cover LGBTQ+ students, as well as survivors and pregnant and parenting students across race and gender identity.” The Human Rights Campaign also praised the rule, stating, “rule will be life-changing for so many LGBTQ+ youth and help ensure LGBTQ+ students can receive the same educational experience as their peers: Going to dances, safely using the restroom, and writing stories that tell the truth about their own lives.”

The rule is slated to go into effect Aug. 1, pending any legal challenges.

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Erin Reed is a transgender woman (she/her pronouns) and researcher who tracks anti-LGBTQ+ legislation around the world and helps people become better advocates for their queer family, friends, colleagues, and community. Reed also is a social media consultant and public speaker.

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The preceding article was first published at Erin In The Morning and is republished with permission.

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Pennsylvania

Malcolm Kenyatta could become the first LGBTQ statewide elected official in Pa.

State lawmaker a prominent Biden-Harris 2024 reelection campaign surrogate

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President Joe Biden, Malcolm Kenyatta, and Vice President Kamala Harris (Official White House Photo by Adam Schultz)

Following his win in the Democratic primary contest on Wednesday, Pennsylvania state Rep. Malcolm Kenyatta, who is running for auditor general, is positioned to potentially become the first openly LGBTQ elected official serving the commonwealth.

In a statement celebrating his victory, LGBTQ+ Victory Fund President Annise Parker said, “Pennsylvanians trust Malcolm Kenyatta to be their watchdog as auditor general because that’s exactly what he’s been as a legislator.”

“LGBTQ+ Victory Fund is all in for Malcolm, because we know he has the experience to win this race and carry on his fight for students, seniors and workers as Pennsylvania’s auditor general,” she said.

Parker added, “LGBTQ+ Americans are severely underrepresented in public office and the numbers are even worse for Black LGBTQ+ representation. I look forward to doing everything I can to mobilize LGBTQ+ Pennsylvanians and our allies to get out and vote for Malcolm this November so we can make history.” 

In April 2023, Kenyatta was appointed by the White House to serve as director of the Presidential Advisory Commission on Advancing Educational Equity, Excellence and Economic Opportunity for Black Americans.

He has been an active surrogate in the Biden-Harris 2024 reelection campaign.

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The White House

White House debuts action plan targeting pollutants in drinking water

Same-sex couples face higher risk from environmental hazards

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President Joe Biden speaks with reporters following an Earth Day event on April 22, 2024 (Screen capture: Forbes/YouTube)

Headlining an Earth Day event in Northern Virginia’s Prince William Forest on Monday, President Joe Biden announced the disbursement of $7 billion in new grants for solar projects and warned of his Republican opponent’s plans to roll back the progress his administration has made toward addressing the harms of climate change.

The administration has led more than 500 programs geared toward communities most impacted by health and safety hazards like pollution and extreme weather events.

In a statement to the Washington Blade on Wednesday, Brenda Mallory, chair of the White House Council on Environmental Quality, said, “President Biden is leading the most ambitious climate, conservation, and environmental justice agenda in history — and that means working toward a future where all people can breathe clean air, drink clean water, and live in a healthy community.”

“This Earth Week, the Biden-Harris Administration announced $7 billion in solar energy projects for over 900,000 households in disadvantaged communities while creating hundreds of thousands of clean energy jobs, which are being made more accessible by the American Climate Corps,” she said. “President Biden is delivering on his promise to help protect all communities from the impacts of climate change — including the LGBTQI+ community — and that we leave no community behind as we build an equitable and inclusive clean energy economy for all.”

Recent milestones in the administration’s climate policies include the U.S. Environmental Protection Agency’s issuance on April 10 of legally enforceable standard for detecting and treating drinking water contaminated with polyfluoroalkyl substances.

“This rule sets health safeguards and will require public water systems to monitor and reduce the levels of PFAS in our nation’s drinking water, and notify the public of any exceedances of those levels,” according to a White House fact sheet. “The rule sets drinking water limits for five individual PFAS, including the most frequently found PFOA and PFOS.”

The move is expected to protect 100 million Americans from exposure to the “forever chemicals,” which have been linked to severe health problems including cancers, liver and heart damage, and developmental impacts in children.

An interactive dashboard from the United States Geological Survey shows the concentrations of polyfluoroalkyl substances in tapwater are highest in urban areas with dense populations, including cities like New York and Los Angeles.

During Biden’s tenure, the federal government has launched more than 500 programs that are geared toward investing in the communities most impacted by climate change, whether the harms may arise from chemical pollutants, extreme weather events, or other causes.

New research by the Williams Institute at the UCLA School of Law found that because LGBTQ Americans are likelier to live in coastal areas and densely populated cities, households with same-sex couples are likelier to experience the adverse effects of climate change.

The report notes that previous research, including a study that used “national Census data on same-sex households by census tract combined with data on hazardous air pollutants (HAPs) from the National Air Toxics Assessment” to model “the relationship between same-sex households and risk of cancer and respiratory illness” found “that higher prevalence of same-sex households is associated with higher risks for these diseases.”

“Climate change action plans at federal, state, and local levels, including disaster preparedness, response, and recovery plans, must be inclusive and address the specific needs and vulnerabilities facing LGBT people,” the Williams Institute wrote.

With respect to polyfluoroalkyl substances, the EPA’s adoption of new standards follows other federal actions undertaken during the Biden-Harris administration to protect firefighters and healthcare workers, test for and clean up pollution, and phase out or reduce use of the chemicals in fire suppressants, food packaging, and federal procurement.

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