The announcement that Kathleen Sebelius would depart the Obama administration generated mixed reactions last week, but LGBT and HIV/AIDS advocates praised her for her work in advancing various LGBT health issues.
Although the troubled rollout of Obamacare and initial questions over whether the administration would meet its enrollment goals cast a pall over Sebelius’ resignation, the overwhelming consensus is she considered HIV/AIDS a priority and ensured LGBT people were part of health policy during her five years at the Department of Health & Human Services.
Fred Sainz, vice president of the Human Rights Campaign, said his organization is “deeply, deeply grateful” for her work, which helped ensure LGBT inclusion in health care reform.
“There’s simply no question that she’s been a steadfast and committed advocate for LGBT Americans,” Sainz said. “It began with her fight to help pass the Affordable Care Act. The ACA includes key provisions that end limitations on preexisting conditions, making it possible for LGBT people, including those with HIV/AIDS to gain access to health insurance.”
After passage of the Affordable Care Act, the Obama administration interpreted the provision in the law prohibiting insurers from discriminating on the basis of gender to prohibit discrimination on the basis of sexual orientation and gender identity.
In August, she delivered an address at a White House summit for the LGBT community geared toward encouraging enrollment in health insurance plans. In 2012, Sebelius also delivered remarks in Philadelphia for a White House summit on health issues in which she touted the health care reform law.
“We need to have an America that values everyone and has the same set of values and same set of rules for everyone,” Sebelius said at the time. “And that belief means ensuring that LGBT Americans have the same protections and opportunities as their neighbors, as their colleagues, as their family members.”
But health care reform was just one aspect of her tenure under which Sebelius worked to advance LGBT issues. One of the first actions that President Obama took on behalf of the LGBT community was a memorandum requiring hospitals receiving Medicare and Medicaid to grant visitation rights to same-sex couples. Sebelius implemented the order, and last year clarified in subsequent guidance those rules also apply to nursing homes receiving funds under those federal programs.
In Healthy People 2020, the nation’s report to improve the health of Americans over the next decade, HHS under Sebelius included a section outlining the needs of LGBT people. Sebelius also commissioned an Institute of Medicine Report on LGBT Health, which called for more data collection and prompted the National Institutes of Health to plan a way forward for LGBT health research.
Sebelius also undertook political outreach to the LGBT community as secretary of health and human services during Obama’s re-eletion campaign in 2012, delivering remarks at an HRC dinner in Charlotte, N.C., and speaking before the LGBT Caucus at the Democratic National Convention in the same city.
The director of the Network for LGBT Health Equity, who goes by the moniker Scout, called Sebelius “a staunch ally of the LGBT communities” during her time at the Department of Health & Human Services.
“She presided over the fastest set of policy changes to benefit LGBT health in the history of this country,” Scout said. “And even when some things did not move forward as expediently as we would have liked, we always knew she supported us unwaveringly. We are saddened to hear she will step down from her position at HHS, but look forward to a successor who can work as diligently for LGBT health gains as she has done all these years.”
HIV/AIDS advocates expressed similar praise for Sebelius. Under her leadership, the administration implemented the President’s National AIDS Strategy, which denoted that gay men are among the most vulnerable populations in the AIDS epidemic.
Although wait lists for AIDS Drug Assistance Programs peaked at about 7,000 during the Obama administration, Sebelius re-directed $80 million in funds in 2013 throughout the states to eliminate the wait to obtain drugs through government assistance.
Carl Schmid, deputy executive director of the AIDS Institute, said Sebelius was “a great champion” for LGBT people and the HIV/AIDS community.
“A lot of people say someone is champion; I would say she really, really was a champion,” Schmid said. “We’re going to miss her because she went to bat for us. In health care reform, she really cared about HIV/AIDS and made sure that ACA worked for people living with HIV/AIDS, and cared for the Ryan White program to make sure that continues. That was one of her personal missions.”
Sebelius was among the speakers representing the Obama administration in 2012 when the International AIDS Conference came to D.C. During her remarks, Sebelius unveiled four public-private initiatives aimed at removing barriers that cause some living with HIV/AIDS within the United States to fall out of care.
Kali Lindsey, amfAR’s deputy director of public policy, said the HIV/AIDS and LGBT communities have ”been able to move several priorities” through the Obama administration over the course of Sebelius’ tenure.
“The National HIV/AIDS Strategy, through systems authorized by the ACA, has positioned the U.S. to achieve an AIDS-free generation, if targeted investments are made to interrupt HIV transmission among gay and bisexual men in the U.S., especially young black and Latino men,” Lindsey said.
But not all health issues affecting the LGBT community saw progress under Sebelius’ tenure. An administrative rule instituted during the height of the AIDS crisis in 1985 by the Food & Drug Administration bars any man who’s had sex with another man since 1977 — even once — from donating blood. The ban has remained in place since that time.
The issue of LGBT data collection is a mixed bag. Sebelius is credited with starting the process for allowing questions on federal health surveys to collect data on the LGBT population. In 2011, she announced that the National Health Interview Survey would incorporate questions on sexual orientation by 2013 and hold a series of roundtables to determine the best way to collect data related to gender identity.
Matt Foreman, former director of the Federal Agencies project that worked with HHS on LGBT health issues between 2010 and 2011, commended Sebelius, but said further work is needed on the data collection issue.
“Her achievements are all the more extraordinary because the Bush administration literally erased the words ‘gay and lesbian’ – and any recognition of our community’s needs — from its lexicon and we had to start at less than zero,” Foreman said. “There is more work to be done in the area of data collection — but that can’t be put on Secretary Sebelius’ shoulders because adding any new data fields costs significant dollars and requires approval by OMB, where there is no pro-LGBT champion like Secretary Sebelius.”
For Scout, the lack of identification of LGBT people as a legally designated disparity population was the biggest challenge during Sebelius’ tenure, although Scout maintained the biggest message is she was “a true ally” for LGBT people.
“When that happens it will impact many funding streams across HHS,” Scout said. “But I’ve learned you don’t always get what you want, you get what can be delivered.”
On HIV/AIDS issues, Lindsey said more work is needed to build off recommendations in the National AIDS Strategy, particularly to target vulnerable minority groups within the LGBT community.
“The alarming rise in HIV incidence among young black and Latino men over the last decade and beyond is of most immediate and particular concern and ensuring timely and sustained access to core public health services for persons at-risk for and living with HIV in states continuing to oppose the ACA also has primacy,” Lindsey said.
Now that Sebelius has departed HHS, these tasks will be up to the next secretary, who will presumably be President Obama’s nominee Sylvia Mathews Burwell, who currently serves as director of the Office of Management & Budget. It remains to be seen whether Burwell will be able to address these issues upon confirmation in the less than three years that remain in the Obama administration.
Rea Carey, executive director of the National Gay & Lesbian Task Force, said in a statement Sebelius has a strong legacy on LGBT health issues upon which her successor can build.
“Because of her hard work and dedication, in every state across the country, LGBT people can buy health insurance plans that don’t discriminate on the basis of sexual orientation and gender identity,” Carey said. “We’ve also seen data collection efforts begin, cultural competency among health providers increasing, and LGBT health issues becoming an integral part of the national conversation about eliminating health disparities. Pending her Senate confirmation, we look forward to working with President Obama’s nominee to replace Secretary Sebelius, Sylvia Mathews Burwell, and hope she will continue the leadership HHS has shown on LGBT issues.”