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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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For lesbian victims of domestic violence, competent care is scare

Heteronormative assumptions, funding cuts contribute to lack of resources for survivors

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Design by Soph Holland.

Uncloseted Media published this story on Sept. 22.

By EMMA PAIDRA | Claire, a 25-year-old Los Angeles resident, distinctly remembers the night she and her ex-girlfriend broke up.

“She was strangling me in a CVS parking lot,” Claire recalls, adding how she was gasping for air as bystanders looked on. “I made eye contact with one man who just kept walking, and we were right behind a car that was trying to reverse out of a parking spot. No one got out of the car. They didn’t honk; they didn’t do anything.”

Claire, who asked to use a pseudonym due to safety concerns regarding her ex, says she managed to fight her way out of her then-girlfriend’s grasp. It was at this moment in 2024 she realized things had reached a breaking point.

While research on intimate-partner violence has traditionally focused on opposite-sex couples, two recent reports found that queer women, like Claire, are not immune to this type of abuse. An international research review published last year in the Journal of Media Critiques found “IPV rates in same-sex relationships are comparable to or exceed those in heterosexual relationships,” with up to 46 percent of lesbians encountering such abuse, compared to 36 percent of straight women. A separate review published earlier this year found that nearly 27 percent of lesbians surveyed had experienced IPV.

Despite the prevalence of IPV in lesbian relationships, heteronormative and outdated assumptions have left many queer women feeling like they have nowhere to turn for competent services and support, according to experts, advocates and victims interviewed by Uncloseted Media.

“Queer folks are joining the conversation to say, ‘This is happening in our communities, too, and we need the same resources and support services that straight women are offered,’” Tori Stranges, a professor of women’s studies at the University of British Columbia, told Uncloseted Media.

A frequently overlooked problem

Stranges says the false notion that only men are domestic abusers can result in violent same-sex relationships not being taken seriously.

“People assume that violence is perpetrated by men against women,” she says, adding that this “has left queer people out of the conversation.”

“If it was a man that was doing all these things, and people heard and saw it, I’m sure I would have been taken seriously,” says Claire. “People saw a 5-foot-7 woman who didn’t look that strong — and above all, she was a woman. Men, especially, don’t really see that as a threat. So they’re like, ‘If I’m not threatened, then I’m sure it’s not a big deal.’”

Outdated assumptions about IPV can even result in victims themselves overlooking their abuse.

“When it comes to abuse in heterosexual relationships, there are national campaigns, there are resources that you can access,” Stranges says. “There are people coming into the school systems to talk about relationship violence. We don’t have similar recognition and the same conversations about queer people.”

Claire says the violence she was subjected to was paired with moments of intense affection, which made it harder for her to recognize the abuse.

“We would get into a fight, and she would physically abuse me, and then apologize. She was actually also very gentle with me sometimes,” Claire recalls. “That kind of cycle can be really addicting. I would always wait for the good parts.”

The role of mental illness

K.P., a 47-year-old lesbian living in Maine, was with her abusive ex-girlfriend for five years before ending the relationship in 2023. During their time together, K.P. says her ex, who struggled with panic disorders, ADHD and depression, experienced a decline in her mental health, which contributed to more frequent outbursts of rage. When it comes to the link between rage and violence, one 2022 meta-analysis found that “anger was a significantly stronger correlate of IPV perpetration for women than men.”

K.P., who was working from home at the time and felt like she had no escape, says her ex’s verbal abuse spiraled into physical violence.

“I was on the couch with my laptop, trying to work, and she was just being belligerent,” recalls K.P., who asked to be identified by only her initials because of safety concerns. “I tuned her out, but when she realized I wasn’t giving her the attention that she expected, she went to the kitchen, grabbed two knives and started coming at me.”

K.P. ran outside, trying to get away. Her ex ran after her and then chased her back inside to avoid being seen by neighbors.

Once inside, her partner hid her phone. K.P. used this brief window to message a co-worker on her laptop, asking him to call the police.

“I was confused and afraid,” K.P. told Uncloseted Media. “I’d never been chased with a knife before, let alone by someone who I cared about.”

Research shows LGBTQ people have higher rates of mental health conditions than their non-LGBTQ peers. A study published last year in JAMA Network Open found sexual and gender minorities had “significantly higher odds of at least four of 10 commonly diagnosed mental health conditions,” including post-traumatic stress disorder and bipolar disorder.

IPV may also contribute to negative mental health effects, with research finding that victims experience an increase in depression, anxiety and PTSD and a reduction in life satisfaction.

“After we broke up, I was messed up,” K.P. says. “It took me a good six or eight months to feel like I could breathe again.”

Trapped in a ‘double closet’

In addition to mental health, the stigma of being queer may affect a victim’s response to being in an abusive relationship. When Claire first came out to her family, she says they kicked her out of their home until she returned to the proverbial closet. They eventually accepted her sexuality, but Claire says the residual shame she carried afterwards led her to avoid the added stigma she feared she’d experience if she admitted to being in an abusive relationship.

“All of that combined made me feel so trapped. I just thought, ‘Oh my god, I’m being judged from every single angle,’” she says. “There was just nowhere to go.”

Letícia Yuki de Araujo Furukawa, a clinical psychologist specializing in supporting survivors of IPV, says this kind of thinking is not uncommon among queer women in abusive relationships.

“Sometimes lesbian women who are experiencing IPV relationships start to isolate themselves, to prevent themselves from the shame and judgment they think they are going to suffer,” she says.

Furukawa says this impulse is rooted in the layers of stigma queer women face.

“It comes down to two things that make it like a double closet: We have the closet of being a lesbian, and you have the other one that comes from being in a violent relationship.”

According to Furukawa, having a supportive family can decrease the risk of entering an abusive relationship. Unfortunately, strained familial relationships are common among queer people: A 2022 study in the Journal of Marriage and Family found that 32 percent of gay and lesbian adult children — compared to 22 percent of their heterosexual counterparts — were estranged from their fathers.

Because of the shame Claire faced from her family when she came out, she was reluctant to admit there was a problem in her relationship when her mother and sister expressed concern. She worried that if her family knew her lesbian relationship was abusive, they would stop accepting her queer identity.

“My mom and sister would say to me during the relationship that they thought my ex looked evil, and that I changed so much. I used to be such a bubbly girl, and my personality made a complete 180,” she remembers. “In my head, I was like, ‘I can’t admit that it’s true.’”

‘Gaps in, policy, care, and services’

When queer women have the courage to report IPV, some don’t receive the response they’re hoping for. When police arrived at K.P.’s home following the knife-wielding incident, she says they opened a case file and wrote an incident report but said there was nothing else they could do because her ex had fled the scene.

“It was a little frustrating that since my ex-girlfriend drove away, the police couldn’t do anything,” K.P. explains.

Laura Elizabeth, an assistant professor of criminal justice at Virginia Union University who researches IPV, says there may have been additional steps police could have taken to support K.P., including connecting her with resources for domestic-violence survivors.

“It is vital that [police] make the proper referrals, and that it not just be limited to handing the victim a brochure,” she says. “There needs to be an active discussion with victims about what their options are in terms of who they can reach out to, who can offer what services.”

Kimberley Jackson, an associate professor at the Arthur Labatt Family School of Nursing at Western University, says lack of research on same-sex domestic violence also impacts the support services available to lesbian victims.

“The intersection of IPV and the LGBTQ community is really not well understood,” Jackson told Uncloseted Media. “What we can tell you based on really limited evidence, is that there are huge gaps in policy, care and services. And with respect to shelters, we haven’t really moved the needle very far.”

One area in which shelters may be failing lesbian victims has to do with both the perpetrator and the victim being able to access the same shelter.

“This issue is further compounded in rural areas, where there’s likely only one shelter,” Jackson says. “There’s a chance they won’t be able to turn someone away, even if they’re the perpetrator.”

Jackson says queer victims of domestic violence who aren’t open about their sexuality may face additional obstacles.

“With respect to anonymity, in a lot of rural places, you’re going to know people in the community,” she says. “There are issues with accessing help if you’re worried about outing yourself.”

Calls for change

Experts and victims say LGBTQ training for shelter workers and law enforcement, as well as funding for research, could help prevent same-sex IPV and address the damage done by such abuse.

But under the Trump-Vance administration, these funding resources are slipping away. In March of last year, the administration canceled at least 68 grants, totaling nearly $40 million, that were focused on LGBTQ health. A second round of cuts followed two months later, during which $800 million worth of grants dedicated to researching LGBTQ health were terminated.

Rebecca Hobbs, co-executive director of Through These Doors, a domestic violence resource and advocacy center in Portland, Maine, says LGBTQ training materials are essential to ensuring shelters can support lesbian victims.

“LGBTQ people will not come to us unless they see themselves reflected in our materials,” Hobbs says. “We want our advocates to be well versed in understanding the additional barriers and challenges that LGBTQ people might experience.”

Advocates say police departments could also benefit from LGBTQ-awareness training.

The state of California and a number of large cities — including Atlanta, Chicago, Los Angeles, Houston, New Orleans, New York, Philadelphia and D.C. — have implemented some form of LGBTQ-sensitivity training.

But Greg Miraglia, founder and CEO of Out to Protect, a national organization supporting LGBTQ police officers and equipping all officers to serve queer people, says these programs are the exception, not the rule.

“Most other states do not require any type of LGBT awareness training,” Miraglia, a retired police officer who is based in California., told Uncloseted Media “There are over 18,000 law enforcement agencies out there, and I don’t think we’ve scratched the surface.”

“The problem comes about when law enforcement goes into a domestic violence incident with a same-sex couple without any training, carrying a lot of stereotypes that are common,” Miraglia adds. “They’re not picking up the fact that this is a couple that’s involved in an intimate relationship, and therefore domestic violence laws in that state apply.”

Claire says she wishes someone had intervened when her ex abused in the CVS parking lot and on her college campus. “The police had the biggest missed opportunity to intervene, as well as campus security,” she says. “A lot of our fights were in public, and she would get very loud. I made a promise to myself that if I ever saw anything like that in public, I would say something, because that’s all I needed at the time.”

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Long-time DignityUSA executive director announces retirement

Marianne Duddy-Burke has been with LGBTQ Catholic group for decades

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DignityUSA Executive Director Marianne Duddy-Burke, right, greets Pope Francis in 2023. Duddy-Burke has announced she will retire from the LGBTQ Catholic group once her successor is named. (Photo courtesy of Marianne Duddy-Burke)

The executive director of the world’s oldest LGBTQ Catholic organization has announced she will retire once her successor has been chosen.

Marianne Duddy-Burke has been with DignityUSA for more than four decades. She has been the group’s executive director since 2007.

DignityUSA announced Duddy-Burke’s retirement on Sept. 17.

Duddy-Burke during her tenure has urged the Vatican to do more to welcome LGBTQ Catholics. She has also, among other things, championed marriage equality and advised the State Department on LGBTQ-specific issues. (The Trump-Vance administration’s decision to freeze nearly all U.S. foreign aid shortly after it took office in January 2025 has had a devastating impact on the global LGBTQ and intersex rights movement and efforts to fight HIV/AIDS around the world. A report that Outright International released earlier this month notes 90 percent of LGBTQ and intersex rights groups around the world have lost funding since 2025.)

Duddy-Burke met with Pope Francis in 2023.

She traveled to Rome in 2025 for the papal conclave to choose the Argentine-born pope’s successor. Pope Leo XIV, who was born in Chicago, succeeded Francis.

DignityUSA in the press release that announced Duddy-Burke’s retirement notes she expressed “particular appreciation to people who spoke honestly about the reality of being a queer Catholic or family member.”

“I have been inspired every day by your stories and have done my best to lift them up,” said Duddy-Burke. “It is your lives, your faith, your struggles, your hopes that I have strived to reflect in my work, and doing this has been a great honor.”

DignityUSA President Meli Barber praised Duddy-Burke.

“It is almost impossible to sum up the scope and depth of Marianne’s achievements and contributions to DignityUSA over her more than four decades of service,” said Barber. “Under her wisdom and leadership, DignityUSA has only grown in stature as an advocate for LGBTQIA+ Catholics and as a visionary thought leader for LGBTQIA+ ministry and spirituality.

“Marianne has been more than an extremely able executive director,” added Barber. “Her care for and ministry to chapters, her deep personal relationships with countless Dignity members, her connections to LGBTQIA+ Catholics around the world, the relationships she has built with other progressive Catholic organizations, her skill as a public representative, the respect with which she is universally regarded, and her tireless devotion to service all leave an indelible mark. It is not an exaggeration to say that she has shaped not only Dignity but a generation of LGBTQIA+ Catholics.”

Barber said DignityUSA will “soon begin a search for a new executive director.” Barber added Duddy-Burke “will assist with the transition.”

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Multi-billion-dollar 9/11 Victim Compensation Fund to continue until 2090

Married, same-sex partners are eligible for federal program

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The September 11th Victim Compensation Fund has awarded more than $18 billion to 77,000 9/11 victims and their families since 2011. (Photo by Anthony Correia/Bigstock)

As part of its commemoration of the 25th anniversary of the 9/11 terrorist attacks, the September 11th Victim Compensation Fund, a federally operated program, released information during the past week showing it has awarded more than $18 billion to over 77,000 9/11 victims and their families since 2011. 

Officials with what’s now referred to as the VCF point out that it was created to provide compensation to individuals or to a court-approved personal representative of a deceased individual who were present at one of the three sites where the hijacked jetliners crashed. 

Among those supported under the program are thousands of rescue workers, clean-up crews, and residents living near the World Trade Center Twin Towers destruction site who became ill, many of whom later died, by being exposed to the toxic fumes created by the fire and falling debris.

“Twenty-five years since that day, the September 11th Victim Compensation Fund has  served tens of thousands of victims and their families, and we continue to receive over 750 new claims each month — a clear indication of the ongoing importance of our mission,” said Allison Turkel, VCF’s leader, who holds the title of Special Master.

In a Sept. 2 briefing for the news media in advance of the 9/11 anniversary commemoration, Turkel pointed out that the VCF operation was upgraded and expanded by separate laws passed by Congress in 2011 and 2019, with the 2019 law signed by President Trump providing full funding to “pay all eligible claims and extended the filing deadline to Oct. 1, 2090.”

LGBTQ advocacy organizations in New York and nationwide have reported that during the time shortly after the 9/11 attacks same-sex surviving partners of 9/11 victims learned they were ineligible for compensation benefits because their same-sex relationships were not legally recognized.

Nicole Nava, a VCF spokesperson, told the Washington Blade that under long established VCF procedures, all applicants for benefit claims regarding a deceased person, whether same-sex or opposite sex, must be appointed as a Personal Representative of the deceased person by a state court. For D.C. residents, the probate division of the D.C. Superior Court appoints a Personal Representative.

“Claims for deceased victims (regardless of the cause of death) may be submitted only by the Personal Representative,” a statement on the VCF website says. “Each state has laws that define the process for appointment of the Personal Representative and the specific authority granted to that Personal Representative,” it says.

The Washington Blade couldn’t immediately determine the criteria for being approved as a Personal Representative by the D.C. Superior Court  and various state courts, including whether a same-sex survivor partner would be eligible for such an appointment. 

A spokesperson for the District of Columbia LGBTQ+ Bar Association, which includes many local attorneys who specialize in a wide range of specialized legal issues, couldn’t immediately be reached to find out if one or more of their members might be able to determine the same-sex partner eligibility for Personal Representative status.  

VCF spokesperson Navas pointed out that the VCF regulations initially did not allow a legally married same-sex partner survivor to receive benefits under the VCF program because the then existing U.S. Defense of Marriage Act, which denied federal recognition of same-sex marriage, prevented VCF from providing benefits to a same-sex partner survivor who had been married in their home state.

But Navas noted that the regulations changed in 2013 when the U.S. Supreme Court declared the Defense of Marriage Act unconstitutional and were further changed in 2015 when the Supreme Court legalized same-sex marriage nationwide. Based on those changes, legally married same-sex partner survivors since 2013 and currently have been and are fully eligible for the VCF benefits.  

The updated regulations would provide benefits to married same-sex partner 9/11 survivors in the states that legalized gay marriage beginning in 2004, when Massachusetts became the first state to legalize same-sex marriage. D.C. legalized same-sex marriage in 2009. 

In her news media briefing, VCF Special Master Turkel said detailed information about how best to file a claim for 9/11 victim compensation is available on the VCF website.

“Twenty-five years since the events of September 11th , 2001, we know it has become increasingly challenging for claimants to find documents needed to prove their presence at an eligible location, which is one of the key requirements to be eligible for compensation,” she said.

She was referring to the requirement that 9/11 surviving victims seeking a claim for support for injuries or illnesses related to the 9/11 attacks must prove they were present at the World Trade Center site, the Pentagon site, or the Shanksville, Pa. site where the hijacked jetliners crashed.

“Our team is committed to ensuring no claimant feels lost or overwhelmed when submitting a claim,” Turkel said at the briefing. “We have a great helpline with real live people who can answer or refer any questions that come in,” she added. “They engage in over 4,000 calls a month on average. We encourage folks to call 1-855-1555 with any questions.”

The VCF website, which has additional detailed information, can be accessed at www.vcf.gov

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