The Case for a Second Term

WASHINGTON -- In a public relations video released late last month, U.S. Secretary of Health and Human Services Kathleen Sebelius enumerated the accomplishments and key news from her agency in 2011.

Two notable developments did not make the final cut. The first was her controversial decision in December overruling a Food and Drug Administration recommendation that Plan B One-Step, an emergency contraceptive, be available without prescription to people under 17.

The second was far less headline-grabbing -- if perhaps far more impactful and not the type of achievement that HHS has otherwise shied away from touting.

Under Secretary Sebelius, HHS has taken a hard look at the breathtaking disparity in health care access that LGBT Americans face. How those who do have access to care are treated in the system seems to vary widely: One striking survey released in 2010 by Lambda Legal reported high rates of myriad negative experiences among gay and transgender respondents, including health care professionals using abusive language or even refusing to touch patients.

With LGBT antidiscrimination legislation and a bill to repeal the Defense of Marriage Act not expected to move anytime soon in a divided Congress, leadership on LGBT health issues from the executive branch has proved crucial.

Some of that progress, as outlined by Sebelius in an October address to the National Coalition for LGBT Health, easily translates into media attention. For example, an Obama administration mandate that forbids hospitals receiving Medicare or Medicaid funds from discriminating on the basis of sexual orientation or gender identity in their visitation policies is "due in no small part" to people like Janice Langbehn who have experienced the tragic consequences of unjust rules, White House officials wrote nearly a year ago when the rule went into effect. In 2007, Langbehn was kept from her dying partner's side in a Miami hospital along with the couple's children. President Obama awarded Langbehn the Presidential Citizens Medal in October for her advocacy on the issue ever since.

Putting a face on other positive steps forward can be difficult. Questions on sexual orientation and gender identity, for instance, have historically been excluded from federal health surveys that factor other demographics such as race and ethnicity, as detailed by a groundbreaking report in 2011 by the Institute of Medicine. Collecting such information on surveys is essential to establishing research priorities and sound health care policy, experts widely agree.

HHS released a two-year data collection plan last year to help close the gap. "The Department of Health and Human Services decision to collect health data on the LGBT population will allow public health professionals to understand for the first time patterns and risks for disease among LGBT people, as well as how to design the most effective interventions," said Ilan Meyer, an expert on LGBT health and a senior scholar of public policy at the Williams Institute. Other agencies, such as the Department of Justice and the Bureau of Labor Statistics, have also moved to incorporate LGBT data collection.

In a recent interview with The Advocate, Secretary Sebelius spoke about the year in LGBT health at HHS, the impact of a U.S. Supreme Court ruling on the Affordable Care Act expected later this year, and how marriage rights (or lack thereof) may affect the health of LGBT Americans.

The Advocate: In your October address to the National Coalition for LGBT Health, you said that the Obama administration "has used all the tools available to us to ensure LGBT Americans have a chance to reach their full potential." Should this president be reelected ...
Secretary Sebelius: When the president is reelected ...

Where do you envision the state of LGBT health to be at the end of a second administration?
I think we'll be in a very, very different place. Two important things are under way right now, but they won't be fully realized until the second term. The full implementation of the Affordable Care Act is a huge step for the LGBT community because we can directly link poor health results to lack of insurance coverage in lots of populations. Lower-income adults without children are in a particularly vulnerable group. With both the expansion of Medicaid and then assistance with tax credits to purchase coverage in a market where no longer will anyone be locked out or priced out because of a preexisting condition -- this changes the ballgame in terms of overall insurance coverage, really for everybody, but I think particularly for a lot of folks in the LGBT community, who may be locked out or priced out of the market right now because of insurance rules, or don't qualify for Medicaid even though they are low income.

The other thing that's happening -- which I think again will be fully realized in the second term but it's under way right now -- is the commitment to begin to collect national health data on the LGBT community. One of the huge gaps, as I addressed in the [National Coalition for LGBT Health] meeting, is that there's so little research that's done. And so most of the health issues are addressed by anecdote. The National Institutes of Health has made a commitment to increase their research funding [on LGBT issues]. Frankly, they were pretty stunned to do a survey and realize how little information there was.

I think adding questions about LGBT status to the National Health Interview Survey will mean that we'll begin to collect data that has never been collected before and be able to drill down on what are the particular issues that this community is vulnerable to. What are the particular health areas that need to be focused on. And I think that will change the way plans are put together and practices are put together forever.

In your view, what are the consequences for LGBT people if health care reform is struck down, in part or in full, by the Supreme Court?
Well, I think all of that goes away. The status quo is pretty dismal. Small group plans are really disintegrating under the economic pressure, and lots of small employers are dropping coverage. If people with preexisting conditions are left to the individual market, it's almost impossible to be covered. If you're HIV-positive or have any kind of condition that needs to be taken care of, you would really be just out of luck, unless you have a lot of resources or work for a large employer and are part of a group pool.

We've got 50 million people who are uninsured. What we know is most of them are middle- or low-income, and a lot of them fit into those categories. So I think the LGBT community is one that would be enormously disadvantaged by striking down the law.

Do LGBT research initiatives under the National Institutes of Health merit a specially designated institute?
I don't know. I think we'll know more once we begin to get some data, whether or not the issues are so individualized that they should be studied in a separate way. I always have mixed feelings about special offices, special institutes.

But official institutes disburse actual funding for research, correct?
They do, but they also do very specific kinds of research, specific disease lines, and specific kinds of illnesses. It's a little hard to speculate at this point [as to] whether or not there will be enough identified that is unique to LGBT [people], or whether it's just a collection of data that says, "These are the most prevalent of issues, and we need to be much more culturally competent." There's not an African-American institute, there's not a Hispanic health institute, so it's a little bit premature. I feel the same way about the creation of offices. Sometimes that can be a good deal; sometimes that's a really siloed way to deal with problems.

One of the things that's gone on here with the LGBT community, which I think may be somewhat of a model for other cabinet departments to look at, is bringing together leaders from across HHS -- out of legal divisions, out of the agency on aging, from the assistant secretary of health, from mental health services. We've come together and begun to do a really deep dive into all of our children and families, all of our policies, and identify what we could do right away to change the way we do business. And that has been a very robust discussion. We've had a lot of engagement from the stakeholder community across the country, and it's resulted in everything from changing hospital rules to a new area in the agency on aging that's focusing on older LGBT issues that never existed before. We've done some specific grants to resource centers through Health Resources and Services Administration to train healthcare providers in cultural competency.

Do you foresee any codified regulation regarding competency training for health care professionals when it comes to the LGBT community?
Well, again, I'm not sure it needs to be. I think that the Health Resources and Services Administration, which [oversees] provider training, has first identified that this is an area that needs to be addressed, in the way that they did with the Hispanic community -- recognizing that cultural familiarity was a barrier. They have very much identified this in the LGBT community. It will be codified into a curriculum that I think will be developed and will become much more robust over time.

I think if we can move administratively and embed some of these changes into just the way our 11 different agencies and various staff divisions run, it's a lot more effective than waiting for Congress to do something, because God knows that may be in the next century. But also it means that it's inculcated down into the permanent staff who's here, it's become part of the curriculum, so it's become part of the culture that doesn't change.

Last fall an advisory committee at the Centers for Disease Control and Prevention recommended human papillomavirus vaccinations for boys and young men. Do you agree with this recommendation?
I haven't had a chance to read the final committee report, though I have been briefed on it by [CDC director] Dr. [Thomas] Frieden. From everything that I read and understand about it, it's a very positive move forward. The great news is that we have a vaccine that really could be effective at preventing cancers that kill thousands of men and women every year. Both the advisory committee at CDC and the Bright Futures committee [on vaccinations] are heavily populated with pediatricians, and I think for the American Academy of Pediatrics to put a stamp of approval [on this] will mean much more to a lot of parents who are looking to their pediatricians to make recommendations about their children's health. So I think that's a good move forward.

What's your take on how HPV vaccinations played a perhaps unexpected role in the GOP primary debates?
I think the Texas situation [with Gov. Rick Perry] was a bit unusual, myself having been a governor. To have a governor mandate that all young girls get this vaccination is something that I've at least never seen before.

The problem is, as you saw in the debates, it was so mischaracterized. Congresswoman [Michele] Bachmann suggested that this vaccine was linked to mental retardation, which has no basis in any kind of fact whatsoever, any kind of scientific advice. So there was never any debate about whether or not the medical protocol made sense, or whether or not this lifesaving vaccine was a good idea. I'm hoping that this recommendation coming out of a scientific body will help people understand more about the HPV vaccine in and of itself. I was struck by the fact that the HPV virus is so prevalent, that over the course of a lifetime half of all men and all women will have the HPV virus. I didn't have any idea it was that widespread, and the notion that there's a vaccine that can actually prevent the cancers that are the result of some of the viruses is pretty stunning.

Do you believe that a right to marry affects health care access and is fundamental to health and well-being?
Well, I certainly am very supportive of the president's notion that we've got to get rid of the Defense of Marriage Act, and there's been legislation that's been introduced in Congress that would wipe it off the books once and for all. I also think it's very important at the federal level to codify the rights and benefits issues, so there's no variation between same-sex couples and heterosexual couples going forward. So I think that's the framework that the federal government needs to tackle, the president has called for that.

I think I'm talking more about marriage in a general context. Do you agree in the research that we've seen, and the positions from medical and mental health organizations who've said that the right to marry, that marriage does affect someone's well-being, access to health care, and that includes gay couples?

I'm not familiar with that study. I am a believer in marriage, I'm about to celebrate a 37th anniversary myself, and I support marriage as an institution.

For instance, there's a study from California that looked at the rates of health insurance coverage for same-sex couples compared to heterosexual couples, and basically found that there were lower rates of insurance coverage for ...
That you are more likely to be uninsured. Well, I think that's probably true, that having access to a spouse's benefits is often a way that a lot of folks get coverage. You know, again, there is legislation that would, and this could be a huge step that's pending in Congress right now, that is very much supported by the administration, that would change the federal law and would wipe out any barrier to benefits, pensions, the range of insurance-related issues that right now are designed for heterosexual couples but not available to same-sex couples. And I think that absolutely needs to go forward.

So in general, would the right to marry for same-sex couples lead to greater health care access?
I don't know. I would think that having a legal framework that eliminated the barriers, any kind of barriers around partnership issues, whether that's pensions or insurance or life insurance or visitation or anything else, I think that would certainly make a huge difference for same-sex couples, no question about it.

What was your reaction to Secretary of Housing and Urban Development Shaun Donovan's recent statement in support of marriage equality?
I think Shaun gave a statement that is something that he believes in and reflects his views as a citizen of the state of New York, and I think he was commenting on what has happened in that state over the last year, which he sees as a big step forward.

A question on the Food and Drug Administration's ban on gay men donating blood: In 2010 an FDA advisory committee ruled to uphold that ban, but at the same time called it "sub-optimal" and worthy of future research on how it may be changed or altered. It's been over a year. What's happened in terms of progress?
There are different studies under way, scientific studies looking at whether or not there is still scientific merit for that ban to be in place. It has been raised as an issue that needs to be reexamined, and it's in the process of being reexamined.

You recently had some listening sessions with the transgender community. When we might see inclusion of transgender questions in data collection?
The field testing as I reported to the coalition is really under way right now, and I think the plan is within a year to have the questions about gender identity as part of the national collection.

You said in the National Coalition for LGBT Health address that we still aren't doing enough for all the populations that HIV affects. Where does responsibility lie for this shortcoming, and what needs to be done?
I think the new framework to have an HIV/AIDS action plan for the United States is important. While there's no question that PEPFAR has been hugely successful internationally, I don't think we've had that same kind of strategic action plan for how we deal with HIV/AIDS in the U.S., one particularly targeted toward populations who are most at risk. And putting that together at the president's direction in 2010 is a big step forward, it gives us a road map. We are now in the process across agencies of reallocating resources to deal with the most at-risk populations, and the areas most at risk, as opposed to one of the things that the federal government loves to do, which is to take a pot of money, spread it out, and everybody gets some.

Looking at where the infection rate is high, we've identified 12 physical communities as well as populations within the communities: African-American women, men who have sex with men, particularly younger African-American men. And then it has to be a multifaceted strategy. The government definitely has a role, at the federal level and at the state and local levels, and we're really calling on states. States have been, in their time of budget crunch, really dropping. Although we keep increasing the [AIDS Drugs Assistance Program] and other strategies here in the federal government, the states have backed away, and I think they really need to be called out to come back to the table. But secondly, we have got to get people involved outside the government, private sector, both funders and employers, people in the faith community, who can reach deeply into communities at risk.

The most frustrating thing is that there's now very good data about how prevention can work, about how to reduce partner-to-partner transmission, early identification and treatment. And yet we have 50,000 new infections popping up. It just doesn't make any sense. So we've got to redouble our efforts on the education front and outreach front to really drill down into the communities most at risk. We're moving resources to really focus on the communities most at risk, and that's been long overdue.

Interview has been edited and condensed.