National
Sebelius promises to collect LGBT data in health surveys
Advocates call for transparency in devising questions
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.
National
Blade reporters reflect on covering Pulse massacre 10 years ago
Orlando stepped up to comfort and support its LGBTQ community
Friday marks 10 years since a gunman killed 49 people inside the Pulse nightclub in Orlando, Fla.
The massacre, which, at the time was the deadliest mass shooting in modern U.S. history, left the LGBTQ community in this country and around the world reeling. It also prompted renewed calls for gun control.
The OnePulse Foundation, which Pulse owner Barbara Poma founded after the massacre, raised upwards of $20 million for a memorial that never materialized.
The city of Orlando in 2023 purchased the Pulse property for $2 million. Crews earlier this year demolished the former nightclub. The city of Orlando has pledged $12 million for a permanent memorial that is scheduled to open in 2027.
Washington Blade Editor Kevin Naff and International News Editor Michael K. Lavers reported from Orlando in the days after the massacre. Here are their reflections a decade later.
Describe the scene when you arrived in Orlando. Where did you go first?
NAFF: Most mainstream reporters headed for the Pulse nightclub, but it was already roped off with police keeping bystanders at least a full city block away. Instead, I hurried to The Center, Orlando’s LGBTQ community center, downtown. I expected to find it locked down with tight security but instead the doors were flung open and everyone inside was busy at work. No tears, just dedicated staff and volunteers working the phones to secure visas and free plane tickets for relatives of the victims. The director gave me a tour and in the back storage room were pallets and pallets of bottled water stacked to the ceiling. When I asked what all the water was for, he said the city had issued a call for blood donations and the lines to donate were 1,500 deep in 100-degree heat. So The Center drove around to all the sites to deliver water to all those standing in line.
That scene was so inspiring and a testament to the strength and resiliency of the LGBTQ community. We’d seen tragedy before and knew how to respond.
LAVERS: I arrived in Orlando about 14 hours after the massacre took place. The city was shellshocked.
Equality Florida, the state’s LGBTQ advocacy group, and other organizations held a press conference at The Center shortly after my flight from D.C. landed. I drove there from the airport. Terry DeCarlo, who was The Center’s executive director at the time, along with then-Equality Florida Executive Director Nadine Smith and others spoke on behalf of a community that was reeling. The Center at the press conference handed out business cards that read, “You matter.” I had it in my wallet when I drove to a makeshift memorial that was a block from Pulse — the police had cordoned off the area immediately around the nightclub. A local resident who I interviewed told me that she did not know if her friends who were at Pulse when the gunman opened fire survived. Another person with whom I spoke shared a similar story.
A torrential downpour began shortly after I arrived. The storm was an apt metaphor for the raw emotion of that horrific day.
What’s your most prominent memory of covering the Pulse massacre?
NAFF: I was covering a vigil in downtown Orlando when then-Florida Gov. Rick Scott’s motorcade arrived unannounced. To that point, he had not addressed the LGBTQ angle and seemed to be downplaying the fact that this was an attack on our community. I hurried to the front row as he held an impromptu news conference. To my dismay, he took only three short questions from TV reporters then rushed away. I grabbed his communications director and insisted that Scott take a question from the LGBTQ media. She agreed and told me to wait next to the SUV. When Scott approached, I asked him, “What is your message to LGBTQ Floridians?”
To my surprise, he sputtered, stammered, and broke into tears before telling me, “This was an attack, what else can you say? This was an attack against the gays, an attack against Hispanics, an attack against our country, our nation and it’s disgusting. The biggest thing we do now is ask how to make sure this doesn’t happen again.”
It was his first public acknowledgment that the LGBTQ community was the target of the attack.
LAVERS: Two moments stand out for me.
The first moment is when then-President Barack Obama and then-Vice President Joe Biden traveled to Orlando on June 16, four days after the massacre. I was one of the reporters who the White House asked to be part of the local press pool. I was about 50 feet away from Obama and Biden when they placed bouquets with 49 flowers — one for each of the victims — at a makeshift memorial between City Hall and the Dr. Phillips Center for the Performing Arts in downtown Orlando. Obama in remarks he made to the press pool mentioned one of the gay victims who had once said, “We cannot be afraid.” The emotions of the last four days simply became too much, and I broke down. Another reporter who was part of the press pool who was standing next to me realized I had broken down. She put her hand on my back to console me.
The second moment came a few weeks later when I was in Puerto Rico to cover the community’s response to the massacre and to interview victims’ relatives. Orlando has a very large Puerto Rican community, and nearly half of those who died at Pulse were of Puerto Rican descent.
I drove to Caguas, a city that is roughly 20 miles south of San Juan, the island’s capital, on July 7, and interviewed Aida Velázquez in her small apartment. Her son, Frankie “Jimmy” de Jesús, died at Pulse. Aida talked about her son, and she showed me pictures of him. Jimmy also danced Jíbaro, a Puerto Rican folk dance. The interview took place less than a month after the massacre — Jimmy’s funeral took place in Caguas less than two weeks earlier.
I sat in my car after the interview and sobbed uncontrollably for nearly five minutes. Nothing can possibly prepare you for interviewing a mother who had just lost her child in the most horrific way possible.
How did the local community respond and what about their response gave you hope or inspiration?
NAFF: In addition to the staff at The Center working to assist victims and their families, everyday Orlando residents stepped up to help however they could. At the downtown vigils, straight mothers and fathers carried signs offering hugs to anyone who needed them. I encountered a group of young teenage males who approached a group of law enforcement officers and appeared to perform for them. When they finished, I asked what they were doing and they told me that they were straight friends who lived in Orlando and wanted to do something to help so they composed an uplifting rap song and walked around performing it for anyone who needed cheering up.
LAVERS: The way that Orlando rallied around the LGBTQ community was simply inspiring.
Imam Muhammad Musri, president of the Islamic Society of Central Florida, at a memorial service that took place at the Dr. Phillips Performing Arts Center on June 13 said his organization was “united as Americans when it comes to standing with the LGBT community and their rights to live freely and to practice their lives here.” This comment underscored the outpouring of support that Orlando showed its LGBTQ community after Pulse. It was also a call for the better angels among us to reject hate in all of its forms.
What surprised you most about the experience?
NAFF: I was most surprised — and moved — after talking to Rev. Debreita Taylor of Oasis Fellowship Ministries, an LGBTQ-affirming ministry.
“My message is love. Period. Love. Period. There’s nothing in the word of God that faith leaders can go to that teaches hate,” she told me. “Have faith and believe that evil and hate can be eradicated one person at a time. How do you treat someone? How do you embrace someone who treats you wrong? We all bleed, laugh, hope and have great victories and major defeats. And so, you know me, even if you don’t know my name — I’m you.”
LAVERS: It admittedly took me quite a while to fully process what I experienced in Orlando — I was focused on doing my job as a reporter, which was to cover the story, and, most importantly, show the human impact of what had happened. I suppose one surprising aspect of the time I spent in Orlando was that I found myself feeling more defiant against those who seek to destroy our community. They want us to live in fear, and I refuse to give them that satisfaction.
What, if anything, changed as a result of Pulse?
NAFF: In the immediate aftermath of the attack, queer spaces began rethinking their approach to security, which has served us well in the years since. Sadly, just a year later, Pulse was bumped to the No. 2 deadliest mass shooting in U.S. history when a gunman opened fire on the Route 91 Harvest music festival in Las Vegas, killing 60 people. Americans and their politicians never learn from these largely preventable tragedies. The carnage continues.
LAVERS: Gun violence remains a shameful scourge in this country. Our community remains vulnerable to violence and discrimination. President Donald Trump, Vice President JD Vance, and other politicians here in Washington, around the country, and overseas continue to use our community to advance an anti-equality agenda. The carnage continues, as my colleague correctly notes, but our community remains strong and defiant. That gives me hope.
National
Queen Jean is Tony’s first transgender winner
Designer/activist wins for work on ‘Cats: The Jellicle Ball’
It was a historic night at the 79th annual Tony Awards on Sunday as Queen Jean won the award for Best Costume Design of a Musical, making her the first out transgender person to win a Tony.
“This experience has been monumental. We are here for the legacy of queer people, trans people,” she said. “We are taking up space in ways we have to take up space. We have to shift the paradigm. So I just want to say, thank you all so much for this incredible honor. The world right now is deeply, deeply combating so many ailments, and we know as a society that when we come together, we can make real, permanent change.”
She won the award for her work on “Cats: The Jellicle Ball” and was also nominated for best costume design of a play for “Liberation.”
In addition to her stage work, Queen Jean is the founder of Black Trans Liberation, an organization that supports trans and gender-nonconforming people in New York City.
National
Madonna turns Times Square into massive dance floor
Pop icon celebrates Pride month with surprise performance
Pop icon Madonna celebrated Pride month with a pop-up performance in New York City’s Times Square on Thursday to the delight of 50,000 fans.
She performed for about 15 minutes high above street level, including several songs from her new album “Confessions II” due on July 3, along with a trio of songs from the first “Confessions on a Dance Floor.”
In addition to the brand new “Love Sensation,” she performed “I Feel So Free” and “Bring Your Love,” plus “Hung Up,” “Get Together” and “I Love New York.” She wished the crowd a happy Pride season; the event was shared with audiences through Grindr’s first-ever livestream.
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