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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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Puerto Rico

The ‘X’ returns to court

1st Circuit hears case over legal recognition of nonbinary Puerto Ricans

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(Photo by Sergei Gnatuk via Bigstock)

Eight months ago, I wrote about this issue at a time when it had not yet reached the judicial level it faces today. Back then, the conversation moved through administrative decisions, public debate, and political resistance. It was unresolved, but it had not yet reached this point.

That has now changed.

Lambda Legal appeared before the 1st U.S. Court of Appeals in Boston, urging the court to uphold a lower court ruling that requires the government of Puerto Rico to issue birth certificates that accurately reflect the identities of nonbinary individuals. The appeal follows a district court decision that found the denial of such recognition to be a violation of the U.S. Constitution.

This marks a turning point. The issue is no longer theoretical. A court has already determined that unequal treatment exists.

The argument presented by the plaintiffs is grounded in Puerto Rico’s own legal framework. Identity birth certificates are not static historical records. They are functional documents used in everyday life. They are required to access employment, education, and essential services. Their purpose is practical, not symbolic.

Within that framework, the exclusion of nonbinary individuals does not stem from a legal limitation. Puerto Rico already allows gender marker corrections on birth certificates for transgender individuals under the precedent established in Arroyo Gonzalez v. Rosselló Nevares. In addition, the current Civil Code recognizes the existence of identity documents that reflect a person’s lived identity beyond the original birth record.

The issue lies in how the law is applied.

Recognition is granted within specific categories, while those who do not identify within that binary structure remain excluded. That exclusion is now at the center of this case.

Lambda Legal’s position is straightforward. Requiring individuals to carry documents that do not reflect who they are forces them into misrepresentation in essential aspects of daily life. This creates practical barriers, exposes them to scrutiny, and places them in a constant state of vulnerability.

The plaintiffs, who were born in Puerto Rico, have made clear that access to accurate identification is not symbolic. It is a basic condition for moving through the world without contradiction imposed by the state.

The fact that this case is now being addressed in the federal court system adds another layer of significance. This is not a pending policy discussion or a legislative proposal. It is a constitutional question. The analysis is not about political preference, but about rights and equal protection under the law.

This case does not exist in isolation.

It unfolds within a broader context in which debates over identity and rights have increasingly been shaped by the growing influence of conservative perspectives in public policy, both in the United States and in Puerto Rico. At the local level, this influence has been reflected in legislative discussions where religious arguments have begun to intersect with decisions that should be grounded in constitutional principles. That intersection creates tension around the separation of church and state and has direct consequences for access to rights.

Recognizing this context is not an attack on faith or religious practice. It is an acknowledgment that when certain perspectives move into the realm of public authority, they can shape outcomes that affect specific communities.

From within Puerto Rico, this is not a distant debate. It is a lived reality. It is present in the difficulty of presenting identification that does not match one’s identity, and in the consequences that follow in workplaces, schools, and government spaces.

The progression of this case introduces the possibility of change within the applicable legal framework. Not because it resolves every tension surrounding the issue, but because it establishes a legal examination of a practice that has long operated under exclusion.

Eight months ago, the conversation centered on ongoing developments. Today, there is already a judicial finding that identifies a violation of rights. What remains is whether that finding will be upheld on appeal.

That process does not guarantee an immediate outcome, but it shifts the ground.

The debate is no longer theoretical.

It is now before the courts.

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National

LGBTQ community explores arming up during heated political times

Interest in gun ownership has increased since Donald Trump returned to office

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Gun rights organizations and advocates say interest in gun ownership seems to have increased in the LGBTQIA+ community since President Donald Trump returned to the White House last year. (Photo by Kaitlin Newman for the Baltimore Banner)

By JOHN-JOHN WILLIAMS IV | As the child of a father who hunted, Vera Snively shied away from firearms, influenced by her mother’s aversion to guns.

Now, the 18-year-old Westminster electrician goes to the shooting range at least once a month. She owns a rifle and a shotgun, and plans to get a handgun when she turns 21.

“I want to be able to defend my community, especially being in political spaces and queer spaces,” said Snively, a trans woman. “It’s just having that extra line of safety, having that extra peace of mind would be important to me.”

Snively is among what some say is a growing number of LGBTQ gun owners across the United States. Gun rights organizations and advocates say interest in gun ownership appears to have increased in that community since President Donald Trump returned to the White House last year.

The rest of this article can be read on the Baltimore Banner’s website.

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Tennessee

Tenn. lawmakers pass transgender “watch list” bill

State Senate to consider measure on Wednesday

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Tennessee, gay news, Washington Blade
Image of the transgender flag with the Tennessee flag in the shape of the state over it. (Image public domain)

The Tennessee House of Representatives passed a bill last week to create a transgender “watch list” that also pushes detransition medical treatment. The state Senate will consider it on Wednesday.

House Bill 754/State Bill 676 has been deemed “ugly” by LGBTQ advocates and criticized by healthcare information litigators as a major privacy concern.

The bill would require “gender clinics accepting funds from this state to perform gender transition procedures to also perform detransition procedures; requires insurance entities providing coverage of gender transition procedures to also cover detransition procedures; requires certain gender clinics and insurance entities to report information regarding detransition procedures to the department of health.”

It would require that any gender-affirming care-providing clinics share the date, age, and sex of patients; any drugs prescribed (dosage, frequency, duration, and method administered); the state and county; the name, contact information, and medical specialty of the healthcare professional who prescribed the treatment; and any past medical history related to “neurological, behavioral, or mental health conditions.” It would also mandate additional information if surgical intervention is prescribed, including details on which healthcare professional made a referral and when.

HB 0754 would also require the state to produce a “comprehensive annual statistical report,” with all collected data shared with the heads of the legislature and the legislative librarian, and eventually published online for public access.

The bill also reframes detransitioning as a major focus of gender-affirming healthcare — despite studies showing that the number of trans people who detransition is statistically quite low, around 13 percent, and is often the result of external pressures (such as discrimination or family) rather than an issue with their gender identity.

This legislation stands in sharp contrast to federal protections restricting what healthcare information can be shared. In 1996, Congress passed the Health Insurance Portability and Accountability Act, or HIPAA, requiring protections for all “individually identifiable health information,” including medical records, conversations, billing information, and other patient data.

Margaret Riley, professor of law, public health sciences, and public policy at the University of Virginia, has written about similar efforts at the federal level, noting the Trump-Vance administration’s push to subpoena multiple hospitals’ records of gender-affirming care for trans patients despite no claims — or proof — that a crime was committed.

It has “sown fear and concern, both among people whose information is sought and among the doctors and other providers who offer such care. Some health providers have reportedly decided to no longer provide gender-affirming care to minors as a result of the inquiries, even in states where that care is legal.” She wrote in an article on the Conversation, where she goes further, pointing out that the push, mostly from conservative members of the government, are pushing extracting this private information “while giving no inkling of any alleged crimes that may have been committed.”

State Rep. Jeremy Faison (R-Cosby), the bill’s sponsor, said in a press conference two weeks ago that he has met dozens of individuals who sought to transition genders and ultimately detransitioned. In committee, an individual testified in support of the bill, claiming that while insurance paid for gender-affirming care, detransition care was not covered.

“I believe that we as a society are going to look back on this time that really burst out in 2014 and think, ‘Dear God, What were we thinking? This was as dumb as frontal lobotomies,’” Faison said of gender-affirming care. “I think we’re going to look back on society one day and think that.”

Jennifer Levi, GLAD Law’s senior director of Transgender and Queer Rights, shared with PBS last year that legislation like this changes the entire concept of HIPAA rights for trans Americans in ways that are invasive and unnecessary.

“It turns doctor-patient confidentiality into government surveillance,” Levi said, later emphasizing this will cause fewer people to seek out the care that they need. “It’s chilling.”

The Washington Blade reached out to the American Civil Liberties Union of Tennessee, which shared this statement from Executive Director Miriam Nemeth:

“HB 754/SB 676 continues the ugly legacy of Tennessee legislators’ attacks on the lives of transgender Tennesseans. Most Tennesseans, regardless of political views, oppose government databases tracking medical decisions made between patients and their doctors. The same should be true here. The state does not threaten to end the livelihood of doctors and fine them $150,000 for safeguarding the sensitive information of people with diabetes, depression, cancer, or other conditions. Trans people and intersex people deserve the same safety, privacy, and equal treatment under the law as everyone else.”

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