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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 itā€™s never been collected, and what our folks came back to us with is we have to figure out ā€” and weā€™re working with providers and advocates right now to actually market-test the questions ā€” how to ask questions in a way that they elicit accurate responses, because collecting data that doesnā€™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 donā€™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 ā€” including in a major LGBT healthĀ report issued just months ago by the Institute of Medicine ā€”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 Iā€™m sure you know, the absence of nationwide data about the LGBT communityā€™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 wonā€™t collect data, so the LGBT community remains stymied.

Itā€™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. Whatā€™s the holdup here?

Kathleen Sebelius: Well, actually, itā€™s a great question, and we fully intend to collect LGBT data. The problem is that itā€™s never been collected, and what our folks came back to us with is we have to figure out ā€” and weā€™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 doesnā€™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 donā€™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

Mass HHS layoffs include HIV/AIDS prevention, policy teams

Democratic states sue over cuts

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

Tuesday began a series of mass layoffs targeting staff, departments, and whole agencies within the U.S. Department of Health and Human Services under Secretary Robert F. Kennedy Jr., who reportedly plans to cut a total of 10,000 jobs.

On the chopping block, according to reports this week, is the Office of Infectious Disease and HIV/AIDS Policy. A fact sheet explaining on the restructuring says “a new Administration for a Healthy America (AHA) will consolidate the OASH, HRSA, SAMHSA, ATSDR, and NIOSH, so as to more efficiently coordinate chronic care and disease prevention programs and harmonize health resources to low-income Americans.”

The document indicates that “Divisions of AHA include Primary Care, Maternal and Child Health, Mental Health, Environmental Health, HIV/AIDS, and Workforce, with support of the U.S. Surgeon General and Policy team.”

“Today, the Trump administration eliminated the staff of several CDC HIV prevention offices, including entire offices conducting public health communication campaigns, modeling and behavioral surveillance, capacity building, and non-lab research,” said a press release Tuesday by the HIV + Hepatitis Policy Institute.

The organization also noted the “reassignments” of Jonathan Mermin, director of the National Center for HIV, Viral Hepatitis, STD, and TB Prevention, and Jeanne Marrazzo, director of the National Institutes of Health’s National Institute of Allergy and Infectious Diseases. Both were moved to the Indian Health Service.

ā€œIn a matter of just a couple days, we are losing our nationā€™s ability to prevent HIV,” said HIV + Hepatitis Policy Institute Executive Director Carl Schmid. “The expertise of the staff, along with their decades of leadership, has now been destroyed and cannot be replaced. We will feel the impacts of these decisions for years to come and it will certainly, sadly, translate into an increase in new HIV infections and higher medical costs.”

The group added, “We are still learning the full extent of the staff cuts and do not know how the administrationā€™s announced reorganization of HHS will impact all HIV treatment, prevention, and research programs, including President Trumpā€™s Ending the HIV Epidemic initiative,” but “At the moment, it seems that we are in the middle of a hurricane and just waiting for the next shoe to drop.”

A group of 500 HIV advocates announced a rally planned for Wednesday morning at 8 a.m., at the U.S. Capitol lawn across from the Cannon House Office Building, which aims to urge Congress to help stop the cuts at HHS.

“Over 500 advocates will rally on Capitol Hill and meet with members of Congress and Hill staff to advocate for maintaining a strong HIV response and detail the potential impact of cuts to and reorganization of HIV prevention and treatment programs,” the groups wrote.

The press release continued, “HHS has stated that it is seeking to cut 10,000 employees, among them 2,400 CDC employees, many doing critical HIV work. It also seeks to merge HIV treatment programming into a new agency raising concerns about maintaining resources for and achieving the outstanding outcomes of the Ryan White HIV/AIDS Program.”

On Tuesday a group of Democratic governors and attorneys general from 23 states and D.C. filed a lawsuit against HHS and Kennedy seeking a temporary restraining order and injunctive relief to halt the funding cuts.

U.S. Centers for Disease Control and Prevention withdrew approximately $11.4 billion in funding for state and community health departments during the COVID-19 pandemic response, along with $1 billion to the Substance Abuse and Mental Health Services Administration.

ā€œSlashing this funding now will reverse our progress on the opioid crisis, throw our mental health systems into chaos, and leave hospitals struggling to care for patients,ā€ New York Attorney General Letitia James said.  

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State Department

Former US envoy for global LGBTQ, intersex rights slams Trump

Former President Joe Biden appointed Jessica Stern in 2021

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Jessica Stern, the former special U.S. envoy for the promotion of LGBTQ and intersex rights abroad, center, speaks outside the U.N. Security Council on March 20, 2023 (Washington Blade photo by Michael K. Lavers)

Jessica Stern, the former special U.S. envoy for the promotion of LGBTQ and intersex rights, says the work that she and her colleagues did under the Biden-Harris administration is “being systematically dismantled.”

“As the person who was responsible for leading U.S. foreign policy on LGBTQI+ issues, it’s been very difficult for the past two months to see that work being systematically dismantled,” she told the Washington Blade on March 19 during a telephone interview.

Stern was the executive director of Outright International, a global LGBTQ and intersex advocacy group, when then-President Joe Biden appointed her in June 2021.

The promotion of LGBTQ and intersex rights was a cornerstone of the Biden-Harris administration’s overall foreign policy. These efforts specifically included the decriminalization of consensual same-sex sexual relations and marriage equality efforts in countries where activists said they were possible through the legislative or judicial processes.

The Trump-Vance administration’s decision to freeze most U.S. foreign aid spending for at least 90 days has had a devastating impact on the global LGBTQ and intersex rights movement. President Donald Trump’s executive order that bans the State Department from issuing passports with “X” gender markers has prompted Germany and several other European countries to issue travel advisories for transgender and nonbinary people who are planning to visit the U.S.

Stern said the Trump-Vance administration “has studied the anti-LGBTQI strategies of other countries and basically imported the worst ideas from around the world: The most violent, the most dehumanizing, the most targeting strategies.” Stern added these policies have emboldened Hungarian Prime Minister Viktor OrbĆ”n, Russian President Vladimir Putin, Argentine President Javier Milei and other anti-LGBTQ heads of state.

“It’s one thing when a small country that has limited global reach implements anti-LGBTQI laws and policies. It’s another thing when one of the world’s superpowers does so,” Stern told the Blade. “There’s no question that the U.S.’s regression on LGBTQI rights is actually going to accelerate backlash against LGBTQI people around the world.”

“We provide political legitimacy to those ideas, but also we’re forging new alliances and coalitions, and we’re pushing these ideas on other countries,” she added. “So, it’s not a passive action. The U.S. government currently is actively funding and disseminating anti-LGBTQI hatred around the world.”

Former State Department colleagues ‘afraid every day’

The Trump-Vance administration in a Feb. 3 statement that defended its efforts to dismantle the U.S. Agency for International Development noted examples of the organization’s “waste and abuse” included $2 million for “sex changes and ‘LGBT activism'” in Guatemala and $1.5 million to “advance diversity, equity and inclusion in Serbia’s workplaces and business communities.” Secretary of State Marco Rubio last month said 83 percent of USAID contracts have been cancelled, and the remaining will “now be administered more effectively under the State Department.”

Rubio after the Trump-Vance administration froze nearly all U.S. foreign aid spending issued a waiver that allowed the President’s Emergency Plan for AIDS Relief and other “life-saving humanitarian assistance” programs to continue to operate.

The Blade has previouslyĀ reportedĀ PEPFAR-funded programs in Kenya, South Africa, and elsewhere have suspended services and even shut down because of a lack of U.S. funding. UNAIDS Executive Director Winnie Byanyima on March 24 said 6.3 million more people around the world will die of AIDS-related complications over the next four years if the U.S. does not fully restore its foreign assistance.

Stern said her former State Department colleagues are “afraid every day.”

“They never know, ‘Am I going to be fired today?’ “Am I going to be put on administrative leave?’,” she said. “I cannot even imagine what it’s like to go to work every day.”

Stern told the Blade her former colleagues tell her that “there’s not a lot of foreign policy work happening because there’s so much disruption being caused by DOGE (the Department of Government Efficiency).”

“Entire departments have been decimated,” she said, noting one of them has lost 60 people. “It’s almost inconceivable to figure out how to restructure your work when your resources have been decimated.”

Jessica Stern speaks at an LGBTQ+ Victory Institute co-organized conference in Mexico City on July 20, 2023. (Washington Blade photo by Michael K. Lavers)

Stern described herself as “an eternal optimist” when the Blade asked whether she thinks the U.S. can ever stand for LGBTQ and intersex rights abroad.

“You have to believe in human rights,” she said.

Stern said former Secretary of State Antony Blinken as “an ally on LGBTQI issues.” Stern also said many of her now former State Department colleagues thanked her and her team for their work before they left government.

“There’s so much compassion from straight and cisgendered allies, from career officials, people that are not human rights experts or specialists, people that don’t focus on the well-being of LGBTQI people, but people that care very much about the United States standing for its values, the rule of law, equality for all, and this notion that it is in our national interest to ensure that there is safety, prosperity, and well-being for people around the world,” she said.

“The situation we find ourselves in will not last forever,” added Stern. “What we have to do is figure out how to hold the line right now, and how to organize for the future.”

She stressed ways to “hold the line” include litigation, protests, letters-to-the-editor, demanding accountability from lawmakers.

“There’s so much to do,” said Stern.

Then-Secretary of State Antony Blinken speaks at a World AIDS Day event hosted by the Business Council for International Understanding on Dec. 2, 2022. (Screen capture via U.S. Department of State YouTube)

Stern is currently teaching at Columbia University’s School of International and Public Affairs, and is writing about her experience as the “first-ever human rights expert to be the special U.S. envoy for LGBTQI rights.” Stern also told the Blade that she is working to launch a new organization.

“I love being an activist again,” she said. “If there was ever a time when activists are needed, it’s now.”

“I am really proud to have rejoined the resistance,” added Stern.

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National

Destination Tomorrow works to empower LGBTQ community

Sean Coleman is Black transgender man who founded group in 2009

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Destination Tomorrow CEO Sean Ebony Coleman (Photo courtesy of Hannah Weill)

Sean Ebony Coleman became the first transgender African American to own and operate an LGBTQ center with the founding of Destination Tomorrow in 2009. Subsequent centers opened up in Atlanta in 2022 and D.C. in 2024. 

Destination Tomorrow was founded on the idea that ā€œit is more helpful to empower our most vulnerable TLGBQ+ community members in a way that takes them off the path of needing emergency care.ā€

ā€œOur organization emphasizes economic, social, and mental empowerment through a variety of holistic educational, financial, support-based, housing, and health programs,ā€ Destination Tomorrow said on the organizationā€™s website.

With Transgender Day of Visibility today and WorldPride coming to D.C. this June, the Washington Blade spoke with Coleman to get some further insight into how Destination Tomorrow and other organizations are responding to the pressure the Trump-Vance administration is putting on the LGBTQ community.

BLADE: What was the overall reaction to the Trump administration and the heavy anti-LGBTQ rhetoric being pushed by the administration from Destination Tomorrow?

COLEMAN: I think the first thing was disbelief, right? You know he’s not well versed, but the embellishments about the community, particularly the trans community, were so outlandish that they became dangerous. So I think the first thing was, people actually believe this, and we have a message in problem because we’re not responding. We really missed an opportunity to message that differently. Like some of them it was so easy for us to respond and say, ā€œWe’re talking about the entire sports world when it comes to college and high schoolā€ and those kinds of things, right? We are definitely focusing on the wrong one percent.

I knew it was like collectively as a trans man, just personally, I was like ā€œokay, so how do you show up now?ā€ You’re in a position that folks expect you to at the very least have something positive to say next steps, this is what we’re gonna do, marching all this, whatever. I’m sitting with it like, no, I’m a little nervous. In the moment, most of the danger and most of the rhetoric is happening towards trans and gender nonconforming people and unfortunately, Black and brown and trans and gender nonconforming folks feel it worse when things like this happen.

BLADE: With a lot of organizations getting threats, losing funding, and everybody just being scared, has Destination Tomorrow specifically received any higher amounts of traffic to your locations, either here or other states?

COLEMAN: All three locations have seen an uptick. Funny thing a lot of them are coming in because they just want community. and we do that intake assessment. Then we say ā€œwhile we have you here, we could do all of these other things.ā€ But it’s really about them coming for community. If you know anything about us, we’re well versed in the house and ballroom community. So we put on balls. We’re planning one now. 

And the young people, particularly young trans people, are also coming in for the ball, but they also want to know. Mr. Coleman, what can we do now? What is it? They want a call to action, want to be motivated and I think we have to figure out again this one message of where weā€™re going to go. Whether it is New York, Atlanta, and D.C., Destination Tomorrow is then going through all of the other trans into the nonconforming organizations. Speaking in one voice and figuring out what movement building looks like for us in this moment and we think that young people should drive it.

Particularly in New York and D.C. will receive some additional resources because we want to be able to address those folks that are going to come in. We want to make sure (to have enough) staff, (increase) our hours. We increase our security and our security presence because that was something that we were concerned about, even if it’s just an in person meeting that we’ve been doing for the last five years, because how do we keep those meetings and that meeting space and our identity safe?

BLADE: Do you feel like given the recent federal government layoffs and this whole Trump takeover of Washington, like, do you think D.C. is prepared or safe enough to start implementing those things that you want to try and get done?

COLEMAN: Yes. I think once weā€™ve taken a moment to step back and assess the situation, we will be able to come out stronger with the initiative that is going to be most important and most impactful for our community, but I think it is going to take some collaborative effort. I don’t think one agency is gonna be able to do it. I think this is a time for collaboration and allies. um, and not in that order. Right? But D.C. is definitely a safe place for LGBT community members worldwide.

It’s gonna be an amazing time. We’re gonna get an opportunity to show how resilient our community is, how much love we still receive. If you look at some things on social media, it’ll seem like everyone’s demonizing the trans and general nonconforming community and that’s not necessarily the case, right? ā€©I think we get sucked into this vacuum with social media and I think once you log off and you actually go outside, you recognize exactly how much support you have from your community. And I think that ties back into our messages. Weā€™re not going to stand around sad and defeated. Weā€™re going to show up, have a good time with WorldPride.

I also see it as an excellent opportunity to strategically put some plans in place. While we have you here, and we’re celebrating, we’re partying, but here is what our next steps will be. We have at least two or three next steps that collectively, you can go back down and all of us a picture goes saying two or three things. Say the same things, stay on message and I think World Pride will be an excellent opportunity to do so.

Along with the comments on TDOV and WorldPride, Coleman also spoke about the current state of LGBTQ politics.

ā€œWhat’s so unfortunate for me is that we lean into our allies, right? Now is the time for our allies to take a look around the room and say ā€œOh wait. This person is missing [in the conversation], we should not be speaking on behalf of Black and brown people,ā€ he told the Blade. ā€œI specifically say Black and brown trans people. [Allies] shouldnā€™t be speaking on behalf of them because I know a few that can actually come here and speak on their own behalf and unfortunately it doesn’t happen. I think it’s because it’s tied into the losing funding across the board. So those LGB organizations are gonna feel that loss. And at some point they may feel like they have to step in and fill a void that they don’t necessarily have to because we’re here.ā€

Specifically in New York, Coleman has been looking toward the local government to help Destination Tomorrow and other organizations stay protected and operational during times like these. 

ā€œTrans, gender nonconforming and LGB issues go across different issues. Whether we’re talking about housing, criminal justice reform, or reproductive rights. We should be included in those discussions, and we should be included in those funding opportunities,ā€ said Coleman. ā€œAnd I think this gives us an opportunity to show that Destination Tomorrow has a program called Pride at Work. to the workforce development program, where we’re pitching it in D.C. and we’re actually in our third year of doing it in New York City. That’s an example of how workforce development should be for all of us, right?ā€

ā€œSo a lot of the work we’ve done in the last couple of months is really meeting with all our elected officials and saying, ‘This is the message that weā€™d like you to push. This is what we want to say, this is how we feel. Because you are not saying it, it feels like you left us behind. This is where you are missing the mark and it is up to you to fix it,ā€™ā€ he added.

A discussion for New York mayoral candidates took place later that evening. One of the things that Coleman wanted to heavily iterate to the candidates was that ā€œat the end of the day, weā€™re paying attention now. We may not have been as politically engaged as we should have been, but we are now.ā€

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