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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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National

House Republicans propose steep cuts in federal AIDS budget

Advocacy groups say move would eliminate ā€˜Ending HIV Epidemicā€™ initiative

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The Ending the HIV Epidemic initiative was launched during the administration of President Donald Trump.

The Republican-controlled U.S. House Subcommittee on Labor, Health, and Human Services, Education, and Related Agencies approved a spending bill on June 26 that calls for cutting at least $419 million from federal AIDS programs that AIDS activists say would have a devastating impact on efforts to greatly reduce the number of new HIV infections by 2030.

The subcommitteeā€™s proposed bill, which includes billions of dollars in cuts in a wide range of other federal health, education, and human services related programs, is scheduled to be considered by the full House Appropriations Committee on July 10. Officials with AIDS advocacy groups say they are hopeful that the full committee, like last year, will refuse to approve the proposed cuts in the AIDS budget.

The proposed GOP cuts would eliminate $214 million from the U.S. Centers for Disease Control and Preventionā€™s HIV prevention programs, $190 million from the Ryan White HIV/AIDS Program, and $15 million from the Department of Health and Human Services Secretaryā€™s Minority HIV/AIDS Program.

Activists say the impact of those cuts would kill the federal governmentā€™s Ending the HIV Epidemic initiative, which among other things, calls for reducing the number of new HIV infections in the U.S. by 75 percent by 2025 and by 90 percent by 2030. The activists point out that ironically the Ending the HIV Epidemic initiative was launched during the administration of President Donald Trump.

 ā€œInstead of providing new investments in ending HIV by increasing funding for testing, prevention programs, such as PrEP, and life-saving care and treatment, House Republicans are again choosing to go through a worthless exercise of cutting programs that the American people depend on and will never pass,ā€ said Carl Schmid, executive director of the HIV + Hepatitis Policy Institute.

ā€œWhile we vigorously fight these cuts, we look forward to working with the entire Congress in a bipartisan fashion on spending bills that can actually become law,ā€ Schmid said in a statement.

 Schmid noted that the bill also includes provisions known as ā€œpolicy ridersā€ that would take away rights and protections from women, such as access to birth control and abortion, and for minorities, including LGBTQ people.

According to a statement released by the office of Rep. Rosa DeLauro (D-Conn.), who is the ranking minority member of the House Appropriations Committee, one of the policy riders would ā€œblock the Biden administrationā€™s policies to ensure nondiscrimination on the basis of gender identity and sexual orientation.ā€™  The statement says another policy rider would ā€œprevent policies or programs intended to promote diversity, equality, or inclusion.ā€

Most political observers believe the Democratic-controlled U.S. Senate would also kill the GOP proposed policy riders and cuts in the AIDS budget if the full Republican-controlled House were to approve the budget bill passed by the appropriations subcommittee.

Rep, Tom Cole (R-Okla.), who serves as chair of the full House Appropriations Committee, released a statement on June 27 defending the  subcommitteeā€™s bill and its proposed spending cuts. ā€œThe bill provides appropriate and fiscally responsible funding to ensure these departments can continue to perform their core missions while also acknowledging the fiscal realities facing our nation,ā€ he said.

ā€œImportantly, the bill pushes back on the Biden administrationā€™s out-of-touch progressive policy agenda, preventing this White House from finalizing or implementing controversial rules or executive orders,ā€ Cole said in his statement. ā€œIt also preserves long standing bipartisan policy provisions protecting the right to life.ā€

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U.S. Supreme Court

Concern over marriage equality in US grows two decades after first Mass. same-sex weddings

Gay and lesbian couples began to marry in Bay State in 2004

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(Bigstock photo)

Two decades after Massachusetts became the first state to legalize same-sex marriage, a new study reveals both significant progress and ongoing challenges for married LGBTQ couples in the U.S., with a growing sense of insecurity about the future of their rights.

The Williams Institute at UCLA School of Law surveyed 484 married same-sex couples from all 50 states and D.C. The study, released Monday, marks the 20th anniversary of legal same-sex marriage in the U.S.

Researchers found that 93 percent of respondents cited love as a primary reason for marrying, with 75 percent also mentioning legal protections. Over 83 percent reported positive changes in their sense of security, and 74.6 percent noted improved life satisfaction since marrying.

However, the study also highlighted persistent discrimination and growing concerns about the future. About 11 percent of couples who had a wedding reported facing prejudice during the planning process.

Alarmingly, nearly 80 percent of respondents expressed concern about the potential overturning of the 2015 Obergefell v. Hodges decision, which legalized same-sex marriage nationwide. This anxiety has been exacerbated by initiatives like Project 2025, a conservative policy blueprint that some fear could roll back LGBTQ rights if implemented.

The possibility of a former President Donald Trump victory in the upcoming election has further intensified these concerns. Many respondents cited Trump’s previous U.S. Supreme Court appointments and his statements on LGBTQ issues as reasons for their apprehension. One participant stated, “The thought of another Trump presidency keeps me up at night. We’ve come so far, but it feels like our rights could be stripped away at any moment.”

The current political climate has 29 percent of respondents considering moving to another state, with 52.9 percent citing socio-political concerns as a primary reason. This reflects a growing sense of insecurity among LGBTQ couples about their rights and freedoms.

Brad Sears, founding executive director of the Williams Institute, noted, “The data clearly show that marriage equality has had a profound positive impact on same-sex couples and their families. However, it also reveals ongoing challenges and serious concerns about the future of these rights in light of current political trends and the upcoming election.”

Christy Mallory, legal director at the Williams Institute and lead author of the study, added, “This research provides crucial insights into the lived experiences of same-sex couples two decades after marriage equality began in the U.S. The high level of concern about potential loss of rights underscores the continued importance of legal protections and public support for LGBTQ+ equality.”

The study found that 30 percent of surveyed couples have children, with 58.1 percent of those parents reporting that marriage provided more stability for their families. However, many of these families now worry about the security of their legal status in the face of potential policy changes and shifting political landscapes.

As the nation reflects on two decades of marriage equality, the study underscores both the transformative power of legal recognition and the ongoing need for vigilance in protecting LGBTQ+ rights. The findings highlight the complex reality faced by same-sex couples in America today: Celebrating hard-won progress while grappling with uncertainty about the future, particularly in light of upcoming political events and potential shifts in leadership.

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State Department

State Department hosts meeting on LGBTQ rights and foreign policy

Event took place before Pride Month reception

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Secretary of State Antony Blinken speaks at the State Department Pride Month event on June 27, 2024. (Screen capture via Forbes Breaking News YouTube)

Secretary of State Antony Blinken on Thursday hosted a group of LGBTQ activists and politicians from around the world at the State Department.

The event ā€” described as a “Convening on U.S. Foreign Policy: National Security, Inclusive Development, and the Human Rights of LGBTQI+ Persons” ā€” took place before the State Department’s annual Pride Month reception. Participants included:

ā€¢ Jessica Stern, the special U.S. envoy for the promotion of LGBTQ and intersex rights

ā€¢ U.S. Ambassador to the U.N. Linda Thomas-Greenfield

ā€¢ U.S. Trade Representative Katherine Tai

ā€¢ U.S. Ambassador to India Eric Garcetti

ā€¢ Suzanne Goldberg, senior advisor to the Under Secretary of State for Civil Security, Democracy, and Human Rights

ā€¢ Under Secretary of State for Civilian Security, Democracy, and Human Rights Uzra Zeya

ā€¢ U.S. Agency for International Development Senior LGBTQI+ Coordinator Jay Gilliam

ā€¢ USAID Counselor Clinton D. White

ā€¢ National Security Council Senior Director for Democracy and Human Rights Kelly Razzouk

ā€¢ Assistant U.S. Secretary of Health Adm. Rachel Levine

ā€¢ National Security Council Human Rights Director Jess Huber

ā€¢ U.N. Assistant Secretary General for Human Rights Ilze Brandt Kehris

ā€¢ Icelandic Ambassador to the U.S. BergdĆ­s EllertsdĆ³ttir

ā€¢ Council for Global Equality Co-Executive Director Mark Bromley

ā€¢ Outright International Senior Advisor for Global Intersex Rights Kimberly Zieselman

ā€¢ Essy Adhiambo, executive director of the Institute for Equality and Non Discrimination in Kenya

ā€¢ Pau GonzĆ”lez, co-chair of Hombres Trans PanamĆ” and PFLAG-PanamĆ”

“Forty-five years ago, thousands gathered in D.C. in what became the first national march for LGBTQI+, demanding their voices be heard,” said Thomas-Greenfield in a post to her X account that showed her speaking at the event. “We must continue to carry forward the spirit of these pioneers and fight for equal rights and dignity for all.”

President Joe Biden in 2021 signed a memo that committed the U.S. to promoting LGBTQ and intersex rights abroad as part of his administrationā€™s overall foreign policy.

“LGBTQI+ rights are human rights,” said Blinken. “Our government has a responsibility to defend them, to promote them ā€” here and everywhere.”

Blinken noted consensual same-sex sexual relations remain criminalized in 64 countries, with the death penalty in 11 of them.

He specifically highlighted Uganda’s Anti-Homosexuality Act and Hungarian Prime Minister Viktor OrbĆ”n’s government’s “smearing scapegoating, stigmatizing LGBTQI+ persons ā€” vilifying them with degrading labels, denying them equal rights, normalizing violence against them.” (Gay U.S. Ambassador to Hungary David Pressman this month marched in the annual Budapest Pride parade.)

Blinken noted Iraqi MPs earlier this year “passed legislation that punishes same-sex relations with up to 15 years in prison.” He also pointed out that Indonesian lawmakers approved a new criminal code banning extramarital sex.

“In a nation where same-sex couples cannot marry, these laws effectively make all same-sex conduct illegal and they undermine privacy for all Indonesians,” said Blinken.

“Weā€™re defending and promoting LGBTQI+ rights around the world,” he said.

Blinken noted seven countries ā€” Barbados, St. Kitts and Nevis, Antigua and Barbuda, Dominica, Namibia, Singapore, the Cook Islands ā€” have decriminalized consensual same-sex sexual relations over the last two years. He also highlighted Greece, Liechtenstein, and Thailand this year extended marriage rights to same-sex couples, and other countries are banning so-called “conversion therapy.”

“These achievements are possible because of incredibly courageous human rights defenders and government partners on the ground, but I believe Americaā€™s support is indispensable,” said Blinken. “When we engage ā€” sometimes publicly, sometimes privately, sometimes both ā€” when we share our own knowledge and experience, we can and we do achieve change.”

Blinken also announced the U.S. now considers sexual orientation and gender identity are part of the International Covenant on Civil and Political Rights that took effect in 1976.

“This is one of the key treaties committing nations to upholding universal rights,” he said. 

“In our regular reporting to the council on human rights, we will continue to include incidents of discrimination or abuse committed against LGBTQI+ persons, now with the clear framework of this well-supported interpretation,” added Blinken.Ā “That will further empower our efforts.”

Blinken reiterated this point and the Biden-Harris administration’s commitment to the promotion of LGBTQ and intersex rights abroad when he spoke at the State Department’s Pride Month event.

“Defending, promoting LGBTQI+ rights globally is the right thing to do, but beyond that, itā€™s the smart and necessary thing to do for our country, for our national security, for our well-being,” he said.

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