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Vol. LXV, No. 15
July 19, 2013
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NIH Holds ‘Listening Session’ for LGBTI Health Issues

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NIH principal deputy director Dr. Lawrence Tabak (second from r) opens session as NIH director Dr. Francis Collins (r) and NICHD director Dr. Alan Guttmacher (l) look on. Not fully visible is Dr. Michael Gottesman, NIH deputy director for intramural research.

NIH principal deputy director Dr. Lawrence Tabak (second from r) opens session as NIH director Dr. Francis Collins (r) and NICHD director Dr. Alan Guttmacher (l) look on. Not fully visible is Dr. Michael Gottesman, NIH deputy director for intramural research.

Advocates and researchers for health issues involving lesbian, gay, bisexual, transgender and intersex (LGBTI) communities had the full attention of NIH leadership on June 27 as NIH hosted a 90-minute “listening session” in Wilson Hall.

NIH director Dr. Francis Collins, principal deputy director Dr. Lawrence Tabak, deputy director for intramural research Dr. Michael Gottesman and NICHD director Dr. Alan Guttmacher took comments and discussed issues with a dozen guests who attended.

The most common refrain heard at the session was the need for LGBTI populations (which includes members of the Native American Two Spirit community) to be designated as a health disparities population, which would make them eligible for federally funded research and research-related opportunities specific to health disparity populations. That decision currently rests with the HHS assistant secretary for health. NIH was also urged to bolster career development for LGBTI investigators, who are familiar with the needs of their communities, as well as for investigators interested in or working on LGBTI health research.

Continued...

“I should say at the outset, we don’t have all the answers,” said Tabak, who called the session the first in a series, and only one of “multiple opportunities” for the LGBTI community to give input to NIH. NIH has also established an email address—lgbtihealthresearch@od.nih.gov—to accept comments indefinitely.

NIH leadership listens to Nate Stinson (l) of NIMHD. Also at the head table is Kellan Baker (r) of the Center for American Progress Dr. Scout of the Fenway Institute makes a point during the listening session.

NIH leadership listens to Nate Stinson (l) of NIMHD. Also at the head table is Kellan Baker (r) of the Center for American Progress.


Dr. Scout of the Fenway Institute makes a point during the listening session.

Photos: Ernie Branson

Collins said that, since 2011, when the Institute of Medicine issued a consensus report on “The Health of Lesbian, Gay, Bisexual, and Transgender People: Building a Foundation for Better Understanding,” NIH has issued three funding announcements on LGBTI health issues, established a standing committee on LGBTI health research issues, revised workforce nondiscrimination policies and hired NIH’s first LGBTI special emphasis program manager—Albert Smith.

Also, that day, NIH issued a Request for Information (RFI) asking for input on challenges, opportunities and outcome indicators related to LGBTI health “to inform the development of an NIH LGBTI Research Strategic Plan.”

“I hope this can be one of many sessions where we learn from one another,” Collins noted.

“Just being recognized here is an incredible statement,” said Seh Welch, a former NIH employee now in graduate school at Kent State University who advocates for and identifies as Two Spirit, or one whose body manifests both a masculine and a feminine spirit. “It’s a new day in America, in our homelands. I am honored to have been here.”

Representing the concerns of those who identify as intersex was Arlene Baratz of the Androgen Insensitivity Syndrome-Disorders of Sex Development Support Group, who said the “I” in LGBTI could as well stand for “isolated or invisible.”

Intersex refers to people with disorders of sex development, or DSDs, and can include people with ambiguous genitalia or some variation in sex characteristics that makes it unclear whether one is distinctly male or female. “Our issues are distinct from those of the LGBT community,” Baratz said.

Harlan Pruden, a member of the Cree Nation who lives in New York City and who belongs to one of the 16 Two Spirit groups in the U.S., also said his community is neglected. “Rarely is my community ever at the table,” he noted.

Collins asked how Two Spirit and LGBTI identities interact—“We may sometimes stumble over this,” he admitted.

“It depends on who you’re talking to,” said Pruden. Two Spirit emphasizes not only coming out, but also coming in, and embracing one’s identity, he said. “There are fundamental differences between Two Spirit and LGBTI.”

Representing the country’s largest LGBT organization, the Human Rights Campaign, was Shane Snowden, who declared, “This meeting today is historic in itself…as moving in its way as what has happened in the [Supreme] Court [which had just struck down barriers to gay marriage].”

The surprise in the room was palpable when Snowden, who spent years on the staff of the University of California at San Francisco, disclosed that even in San Francisco, identifying as gay faculty was exceedingly rare. Further, she said LGBT graduate students at UCSF viewed being out as a career killer, a sure detour from the path to a Nobel Prize.

“‘Go ahead, don’t be scared’ should be NIH’s message,” she said.

“NIH can make a huge difference in the lives of LGBTI people,” said Fenway’s Dr. Judith Bradford.

“NIH can make a huge difference in the lives of LGBTI people,” said Fenway’s Dr. Judith Bradford.

Another advocate for the intersex community was Karen Walsh, an adult NIH outpatient who said, “I received very poor medical attention until I came to NIH…As an American citizen, this shouldn’t have happened.”

Walsh said she has androgen insensitivity syndrome, but had been dismissed by doctors who labeled her “a genetic male and a postmenopausal woman.” She decried a lack of data about people with her condition and a dearth “of follow-up on wellness for anyone with an intersex condition…We don’t feel well understood…I am extremely grateful that you included intersexuality in this group.”

David Bond of the Trevor Project offered sobering statistics about unmet health needs in lesbian, gay, bisexual, transgender and questioning (LGBTQ) communities, including: 40 percent of homeless and runaway youth identify as LGBTQ; LGBTQ youth are 4 times more likely to commit suicide than non-LGBTQ peers; and about 50 percent of transgender youth have attempted suicide.

“NIH can make a huge difference in the lives of LGBTI people,” said Dr. Judith Bradford of the Fenway Institute and Virginia Commonwealth University. “I hope you’ll put this together in some kind of organized way...that recognizes us as a population, not in pieces here and there that fill holes.” She insisted that if people just got to know, on a personal level, the human beings who happen to identify as LGBTI, “then other issues will disappear.”

Collins concluded, “I found this to be an extremely useful 90 minutes. It was just the kind of consciousness-raising that I had hoped would happen. We are intensely interested in doing the right thing here. I hope you will be patient with us as we wrestle with our budgetary situation…We’re in a crisis situation and are feeling a pretty dreadful squeeze at the moment. We can’t move as quickly as we’d like in any research area…But we want to be innovative and bold. We want to be part of this great week [that included the Supreme Court DOMA decision], this sea change.”

To watch a videocast of the session, visit http://videocast.nih.gov/summary.asp?Live=12839.


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