An under-reported story that broke on June 29 was this announcement by Obama's Health And Human Services:
HHS Secretary Kathleen Sebelius today announced new draft standards for collecting and reporting data on race, ethnicity, sex, primary language and disability status, and announced the administration’s plans to begin collecting health data on lesbian, gay, bisexual and transgender (LGBT) populations. Both efforts aim to help researchers, policy makers, health providers and advocates to identify and address health disparities afflicting these communities.
“Health disparities have persistent and costly affects for minority communities, and the whole country,” Secretary Sebelius said. “Today we are taking critical steps toward ensuring the collection of useful national data on minority groups, including for the first time, LGBT populations. The data we will eventually collect in these efforts will serve as powerful tools and help us in our fight to end health disparities.”
(I truncated HHS's statement. Policy wonks can read the rest of it here.)
I was aware at the time it was actually pretty big news and deserved better coverage than it was given.
But, this news got somewhat lost in the crush of New York's marriage equality, White House Pride reception, the DOJ's Golinski/DOMA brief and other things.
And that was a shame, it should not be overlooked. It appears to be an honest and substantial advance for the LGBT community that promises to reap rewards in the coming years. Improved data collection methods and protocols will help health professionals who work to improve the quality of life for LGBT people. It also promises to open new avenues for targeted research grants. And the administration is to be commended for being Trans-inclusive in this initiative.
And the HHS seems to be approaching the task quite seriously and engaging the LGBT community admirably.
I am, however, aware of the limits of my own abilities to interpret, digest and evaluate wonky policy minutia on some topics, health being one of them. This is when it's good to have friends. A wonderful benefit of Netroots Nation is the opportunity to expand your network. While there, I was fortunate enough to meet Dr. Scout, a public health advocate and the Director of the Network for LGBT Health Equity at the Fenway Institute in Boston. I have subsequently convinced Scout to write us a guest post on this topic.
After the fold, Scout's take on initiatives the Obama administration has taken regarding LGBT health concerns and what it means for the LGBT community.
Please also welcome Scout to Daily Kos. Scout will be posting under the handle ScoutOut and is live to answer questions.
…In Sickness & In Health: LGBT Health Issues Make Steady Gains Under Obama
By Scout, Ph.D.
Director, The Network for LGBT Health Equity
at The Fenway Institute
While I cheer for DADT, NY marriage, and have great hopes for ENDA, my interest is really caught by U.S. Department of Health and Human Services (HHS), which is making some interesting inroads in addressing long ignored LGBT health disparities.
The topic of LGBT (lesbian, gay, bisexual, and transgender) health disparities isn’t an intuitive one. We’re not biologically different than others. But it turns out most of health isn’t governed by biology, but social factors. Over years, my fellow LGBT health researchers have been steadily documenting a myriad of ways the discrimination we face takes its toll on our health. As just a few examples: our youth are at higher risk for suicide, too many of us avoid doctors or hide being LGBT to avoid discrimination, and we smoke at much higher rates than others.
The federal government has a large mechanism for addressing and trying to fix health disparities, millions of dollars are poured into these efforts every year.
Problem is, LGBT people are not counted in the health surveys, thus our disparities are not documented to the usual standards. No one argues they exist, but we are invisible on the biggest health surveys, which are often the basis of the major policy decisions.
Further, we know that treating everyone the same fails for us. As I say in every cultural competency training, “Until you show you are welcoming to LGBT people, we have no assurance it’s a safe space for us.”
That invisibility combined with problems with political will has left us with a legacy of being forgotten or excluded from health disparity efforts.
Back in 2002 HHS actually created a long department-wide plan to address LGBT Health disparities. Needless to say, there was little progress in the 8 years that followed.
So, now we’re 2.5 years into a new administration, one that has been open to valuing the abundant science showing these health disparities need to be addressed. How far have we come?
After a slow start, HHS senior officials have been steadily churning out policy documents that now include and even prioritize LGB and yes, even T health disparities.
The inclusion of “T” alone is a point to celebrate. Even when questions had been added to surveys, they usually just covered LGB. Yet, there’s ample evidence transgender people experience profound, sometimes life threatening discrimination. But even if we sometimes forget the T in our own communities, both HHS and the White House are clearly echoing back that they understand T is not optional.
In truth, this top-level commitment is sometimes not seen in lower decision making. My shop, the Network for LGBT Health Equity at The Fenway Institute, has made a veritable hobby of running action alerts urging people to write into HHS and say “you forgot to add transgender… aaaagain.”
Overall the last year has been especially rewarding for LGBT health gains. As is so often the case, openly LGB (not T yet in health) appointees are leading the charge. Having openly LGB Pamela Hyde, David Hansell, and Kathy Greenlee run three large HHS agencies has brought needed expertise and translated directly into federal funding for local LGBT foster care, suicide prevention, and elder services.
One major recent win was the inclusion of LGBT as a priority disparity population in their decennial guiding policy plan: Healthy People 2020. Now grantwriters everywhere can say “you should fund this project because eliminating our health disparities is a national priority”. States also model their local plans on that national one, so again, the precedent is significant.
Another major win was the recent release of an HHS-commissioned Institute of Medicine report on LGBT health disparities. This non-governmental group is viewed as the definitive scientific expertise body. Their word is gold.
Nicely, even the advocates were surprised at how far the Institute of Medicine report went, urging not only data collection but recommending all research demonstrate LGBT inclusion, or justify why we are excluded.
Yet another major step was the release of Secretary Sebelius’s recommendations to improve LGBT health. That document has an excellent list of what they have done so far. It also promises new items like more data collection, adding cultural competency to training programs, and a forthcoming tool to assist people in finding insurance that includes same-sex partner benefits. Overall, many excellent promises are listed. I look forward to seeing them come about.
Just last week was the largest announcement of all: the release of specific HHS plans to include LGB and eventually T on their pre-eminent health survey, the National Health Interview Survey. This is flat out the premier request put forth by LGBT health experts for years. Advocates have been assured this plan is actually funded.
Being counted on this survey will unleash a waterfall of data about our health problems. This not only gives us better information on what to fix, but gives us the evidence so our grantwriters can be competitive when asking for funds to improve our health.
People close to HHS know this announcement was a big lift and well over a year in coming. It cost more than expected and there were more hurdles than expected.
The major reason this is costing millions of dollars is because HHS is using the highest possible level of science to develop the questions. Interestingly, one of the problems that’s embedded in most of the current questions is that straight people sometimes are confused by the word “heterosexual”. So they check other categories, creating bias and error in the already small LGBT datasets.
As HHS officials note, there is more existing testing of LGB questions than T questions. It’s sadly our own community researchers who have prioritized developing LGB over T measures. Nonetheless, I hope that the testing for transgender survey questions can be rushed to reattach itself to the LGB question rollout because the thought of “eventually T questions will be added” is a large yellow flag in my brain. Reminds me of ENDA.
All said, it is excellent that this scientific rigor is being used. We will soon have questions that can be reliably added to other surveys outside of HHS. Department of Labor can do a better job measuring workplace discrimination, Department of Housing can assess housing discrimination, and of course, we can finally be counted on the Census.
I absolutely applaud HHS staff and the internal leaders who have stayed with the effort for years. I commend Secretary Sebelius and Assistant Secretary Howard Koh for their repeated public dedication to eliminating LGBT health disparities.
I give a special nod to our friend Dr. Garth Graham, the Deputy Assistant Secretary for Minority Health. Dr. Graham is an outstanding example of the many internal non-LGBT racial/ethnic minority heath leaders who have readily embraced and championed the inclusion of LGBT health disparities in routine work. These alliances between non-LGBT racial/ethnic leadership and the obviously multicultural LGBT community leadership are often very new and give me high hopes for future joint alliances.
So, there have been several notable gains, they absolutely will change the lives of many LGBT people in towns and cities across the nation, we might ask: Is it enough?
Of course not. The decades of invisibility are not countered with a few policy documents or our addition to one health survey next year. LGBT health disparities are still the awkward stepchild in the health family.
Right now transgender friends of mine live in fear of ever needing emergency services. Why? Because we have plenty of examples where paramedics haven’t shown minimal transgender sensitivity, sometimes with deadly consequences. I think no one should ever fear calling 911.
Meanwhile, CDC just released the call for proposals for their flagship prevention funding stream, Community Transformation Grants. The announcement says:“All Americans should have equal opportunities to make healthy choices that allow them to live long, healthy lives, regardless of their income, education or race/ethnic background.”I believe when the government releases $100 million dollars of new prevention funds, that people should also be able to live long healthy lives regardless of their “sexual and gender minority status.” (And “disability status” as well.) Until then, we will continue to hear stories like we are now from California, where advocates are asking for LGBT outreach to be included in the state proposal for these funds, but as of yet, not getting very far.
The government has taken leadership on LGBT health at the top level. Now, it needs to be brought down to the funding streams.
We need to see a large-scale public initiative on LGBT health. We need to have consistent explicit prioritization as a disparity population in funding announcements, calls for research, career development, or loan repayment programs (and if relevant, additional funds to cover the expanded scope). We need to be routinely included on all health surveys. We need to be assured HHS funds are never used to discriminate.
When Dr. Bostwick asks if that National Institutes of Health call for disparities research welcomes LGBT focused proposals, I’d like to be confident the answer is “yes”. Right now, I think Secretary Sebelius would say yes, but since it's not in the NIH language, I'm not sure the grant reviewers know that.
As a first step, HHS needs to dedicate additional internal resources so they can accomplish the changes they have promised. Right now, they depend too much on internal staff who already have fulltime workloads, and external advocates, such as The Fenway Institute, The National Coalition for LGBT Health, or the New Beginnings Initiative, who are constantly monitoring them to find out where LGBT is being left off this time.
Staff and funding resources can be added at many levels, most easily to the disparity offices at each HHS agency. Yes, I understand it’s a difficult budget year. But remember, no one is suggesting HHS serve new people, simply that oversights in current services be fixed.
I do commend HHS for doing one more thing absolutely right. In the recent announcement about data collection they also said they would convene external LGBT experts to help guide their new work. I know probably all of the community experts they are going to convene, and I know this isn’t the first time most of us have been tapped to give HHS advice on LGBT health. That’s good, and not a small point. Keep asking us HHS, we’ll give you some excellent advice, because we’ve had decades to notice what is missing.
Dr. Scout is an openly transgender survey researcher and health policy advocate who is the Director of the Network for LGBT Health Equity at The Fenway Institute in Boston, MA.