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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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Biden administration to ban discrimination against LGBTQ patients

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The Biden administration announced on Monday it would enforce civil rights protections under Obamacare to prohibit discrimination in health care against patients for being LGBTQ, reversing policy during the Trump years excluding transgender status as a protected characteristic under the law.

The Department of Health & Human Services declared it would enforce Section 1557 of the Affordable Care Act, which prohibits discrimination in health care on the basis of sex, and begin to take up cases of discrimination based on sexual orientation and gender identity.

HHS Secretary Xavier Becerra said in a statement the Supreme Court has “made clear that people have a right not to be discriminated against on the basis of sex and receive equal treatment under the law, no matter their gender identity or sexual orientation.”

“Fear of discrimination can lead individuals to forgo care, which can have serious negative health consequences,” Becerra said. “It is the position of the Department of Health and Human Services that everyone — including LGBTQ people — should be able to access health care, free from discrimination or interference, period.”

The move is consistent with the executive order President Biden signed on his first day in office directing federal agencies to implement the U.S. Supreme Court’s decision last year in Bostock v. Clayton County to the furthest extent possible. Federal agencies were directed to comply within 100 days of the executive order, which is about now and a short time after Biden’s first 100 days in office.

The announcement with respect to Section 1557 comes on the same day as the hearing took place this morning in Bagly v. HHS, a case before a federal court in Massachusetts challenging Trump’s undoing of transgender protections under the law. An attorney with the U.S. Justice Department announced a new notice of proposed rule-making is coming with respect to Section 1557.

Sharita Gruberg, vice president for the LGBTQ Research and Communications Project at the Center for American Progress, said in a statement the change “assures LGBTQ people that their rights will be upheld at the doctor’s office, vaccine sites, and everywhere else they seek health care and coverage.”

“The administration’s announcement that it will enforce these protections are a critical step toward addressing vaccine hesitancy among LGBTQ people, a population that has been disproportionately impacted by the pandemic and seriously harmed by the previous administration’s attempts to permit discrimination against LGBTQ patients, Gruberg added.

The past three administrations have instituted policy on LGBTQ protections based on their interpretation of Section 1557. Each move had varying implications and directions for LGBTQ patients.

The Obama administration issued a rule in 2016 interpreting Section 1557 to apply to cases of anti-transgender discrimination and discrimination against women who have had abortions, which was consistent with court rulings at the time. However, that move was enjoined by a nationwide court order in Texas as a result of litigation filed by Texas Attorney General Ken Paxton.

The Trump administration, shortly after the Supreme Court’s ruling in Bostock, made final a regulation proposed last year rescinding the Obama administration’s transgender protections under Section 1557. Faced with criticism, the Trump administration defended itself by saying its move was consistent with the court order in Texas, although it seemed to ignore the decision from the higher court.

The new rule from HHS goes above and the beyond the Obama administration by instituting protections based on both sexual orientation and gender identity. It wasn’t immediately clear whether the proposed rule would be a new regulation entirely, or seek to modify the changes that were made in the two previous administrations. The Blade has placed a request seeking comment with HHS.

Susan Bailey, president of the American Medical Association, said in a statement the new HHS rule is a welcome change after the Trump administration rescinded protections for transgender patients.

“It’s unfortunate that such an obvious step had to be taken; the AMA welcomes this common-sense understanding of the law,” Bailey said. “This move is a victory for health equity and ends a dismal chapter in which a federal agency sought to remove civil rights protections.”

Discrimination in health care is an experience transgender people commonly report. The U.S. Transgender Survey in 2015 found one-third of responders said they had at least one negative experience in health care related to being transgender. Further, 23 percent of responders said they didn’t seek health care because they feared being mistreated and one-third said they didn’t go to a provider because they couldn’t afford it.

A Center for American Progress survey from 2018 had similar findings with respect to transgender people and patients with being gay, lesbian and bisexual or queer. Eight percent of responders said a doctor refused to see them because of their perceived or actual sexual orientation, while 28 percent of providers said a doctor refused to see them because of their actual or perceived sexual orientation.

Hospitals, especially religiously affiliated providers, refusing to provide transition-related care, including gender assignment surgery, is another frequently reported incident for transgender patients. The American Civil Liberties Union, for example, has filed litigation against hospitals under Section 1557 for refusing to perform the procedure.

Rachel Levine, assistant secretary of health and the first openly transgender presidential appointee to obtain Senate confirmation, hailed the HHS rule change in a statement.

“The mission of our Department is to enhance the health and well-being of all Americans, no matter their gender identity or sexual orientation. All people need access to healthcare services to fix a broken bone, protect their heart health, and screen for cancer risk,” Levine said. “No one should be discriminated against when seeking medical services because of who they are.”

Although the Biden administration’s announcement is a welcome move for LGBTQ advocacy groups, the change is not without critics.

John Banzhaf, a law professor at George Washington University who declares himself a supporter of transgender rights, said the policy could have unintended consequences, which he said has become evident in the British health system.

“[Transgender] individuals with a penis but no vagina are being asked to have medical tests on their non-existent cervices, while [transgender] persons with a vagina and cervix will not be asked, under new guidelines which appear to place lives at risk and encourage a physically impossible medical exam on organs which simply do not exist,” Banzhaf said. “And, carrying this absurdity to its totally illogical conclusion, a patient with a penis and a full beard was offered a cervical test because, despite his clearly masculine appearance and style of dress, he registered himself as being gender neutral.”

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Bill to ban conversion therapy dies in Puerto Rico Senate committee

Advocacy group describes lawmakers as cowards

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Puerto Rico Pulse nightclub victims, gay news, Washington Blade

 

A Puerto Rico Senate committee on Thursday killed a bill that would have banned so-called conversion therapy on the island.

Members of the Senate Community Initiatives, Mental Health and Addiction Committee voted against Senate Bill 184 by an 8-7 vote margin. Three senators abstained.

Amárilis Pagán Jiménez, a spokesperson for Comité Amplio para la Búsqueda de la Equidad, a coalition of Puerto Rican human rights groups, in a statement sharply criticized the senators who opposed the measure.

“If they publicly recognize that conversion therapies are abuse, if they even voted for a similar bill in the past, if the hearings clearly established that the bill was well-written and was supported by more than 78 professional and civil entities and that it did not interfere with freedom of religion or with the right of fathers and mothers to raise their children, voting against it is therefore one of two things: You are either a hopeless coward or you have the same homophobic and abusive mentality of the hate groups that oppose the bill,” said Pagán in a statement.

Thursday’s vote comes against the backdrop of continued anti-LGBTQ discrimination and violence in Puerto Rico.

Six of the 44 transgender and gender non-conforming people who were reported murdered in the U.S. in 2020 were from Puerto Rico.

A state of emergency over gender-based violence that Gov. Pedro Pierluisi declared earlier this year is LGBTQ-inclusive. Then-Gov. Ricardo Rosselló in 2019 signed an executive order that banned conversion therapy for minors in Puerto Rico.

“These therapies lack scientific basis,” he said. “They cause pain and unnecessary suffering.”

Rosselló issued the order less than two weeks after members of the New Progressive Party, a pro-statehood party  he chaired at the time, blocked a vote in the Puerto Rico House of Representatives on a bill that would have banned conversion therapy for minors in the U.S. commonwealth. Seven out of the 11 New Progressive Party members who are on the Senate Community Initiatives, Mental Health and Addiction Committee voted against SB 184.

“It’s appalling. It’s shameful that the senators didn’t have the strength and the courage that our LGBTQ youth have, and it’s to be brave and to defend our dignity and our humanity as people who live on this island,” said Pedro Julio Serrano, founder of Puerto Rico Para [email protected], a Puerto Rican LGBTQ rights group, in a video. “It’s disgraceful that the senators decided to vote down this measure that would prevent child abuse.”

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Undocumented LGBTQ immigrants turn to Fla. group for support

Survivors Pathway is based in Miami

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Survivors Pathway works with undocumented LGBTQ immigrants and other vulnerable groups in South Florida. (Photo courtesy of Francesco Duberli)

 

MIAMI – The CEO of an organization that provides support to undocumented LGBTQ immigrants says the Biden administration has given many of his clients a renewed sense of hope.

“People definitely feel much more relaxed,” Survivors Pathway CEO Francesco Duberli told the Washington Blade on March 5 during an interview at his Miami office. “There’s much hope. You can tell … the conversation’s shifted.”

Duberli — a gay man from Colombia who received asylum in the U.S. because of anti-gay persecution he suffered in his homeland — founded Survivors Pathway in 2011. The Miami-based organization currently has 23 employees.

Survivors Pathway CEO Francesco Duberli at his office in Miami on March 5, 2021. (Washington Blade photo by Yariel Valdés González)

Duberli said upwards of 50 percent of Survivors Pathway’s clients are undocumented. Duberli told the Blade that many of them are survivors of domestic violence, sexual assault and human trafficking and victims of hate crimes based on their sexual orientation and gender identity.

“Part of the work that we have done for years is for us to become the bridge between the communities and law enforcement or the justice system in the United States,” said Duberli. “We have focused on creating a language that helps us to create this communication between the undocumented immigrant community and law enforcement, the state attorney’s office and the court.”

“The fear is not only about immigration,” he added. “There are many other factors that immigrants bring with them that became barriers in terms of wanting to or trying to access the justice system in the United States.”

Duberli spoke with the Blade roughly a week after the Biden administration began to allow into the U.S. asylum seekers who had been forced to pursue their cases in Mexico under the previous White House’s “Remain in Mexico” policy.

The administration this week began to reunite migrant children who the Trump administration separated from their parents. Title 42, a Centers for Disease Control and Prevention rule that closed the Southern border to most asylum seekers and migrants because of the coronavirus pandemic, remains in place.

Duberli told the Blade that Survivors Pathway advised some of their clients not to apply for asylum or seek visa renewals until after the election. Duberli conceded “the truth of the matter is that the laws haven’t changed that much” since Biden became president.

Survivors Pathway has worked with LGBTQ people in U.S. Immigration and Customs Enforcement custody in South Florida. American Civil Liberties Union National Political Director Ronald Newman in an April 28 letter it sent to Homeland Security Secretary Alejandro Mayorkas called for the closure of the Krome North Service Processing Center in Miami, the Glades County Detention Center near Lake Okeechobee and 37 other ICE detention centers across the country.

The road leading to the Krome North Service Processing Center in Miami on June 7, 2020. (Washington Blade photo by Michael K. Lavers)

Survivors Pathway responded to trans woman’s murder in 2020

Survivors Pathway has created a project specifically for trans Latina women who Duberli told the Blade don’t know they can access the judicial system.

Duberli said Survivors Pathway works with local judges and police departments to ensure crime victims don’t feel “discriminated, or outed or mistreated or revictimized” because of their gender identity. Survivors Pathway also works with Marytrini, a drag queen from Cuba who is the artistic producer at Azúcar, a gay nightclub near Miami’s Little Havana neighborhood.

Marytrini and Duberli are among those who responded to the case of Yunieski “Yuni” Carey Herrera, a trans woman and well-known activist and performer from Cuba who was murdered inside her downtown Miami apartment last November. Carey’s boyfriend, who had previously been charged with domestic violence, has been charged with murder.

“That was an ongoing situation,” noted Duberli. “It’s not the only case. There are lots of cases like that.”

Duberli noted a gay man in Miami Beach was killed by his partner the same week.

“There are lots of crimes that happen to our community that never gets to the news,” he said. “We got those cases here because of what we do.”

Yunieski “Yuni” Carey Herrera was murdered in her downtown Miami apartment in November 2020. (Photo courtesy of social media)

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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