For any longtime LGBT health researcher, 2003 stands out — it was the year that the Traditional Values Coalition compiled a list of research studies by the National Institutes of Health and slipped that list to Congress. What follows rocked the LGBT research world and was described by the New York Times as “Big Chill at the Lab“. Established investigators were put on edge for months, living with the threat that extensively peer reviewed research would be defunded in a flame of political backlash. Many anxiously waited the call to defend their studies before Congress. Extensively-justified research projects that independent scientists had judged to be worth enough to achieve NIH funding were now reduced to sensational headlines. After lambasting a funded project for being based on the supposedly frivolous assumption that American Indian transgender people were understudied, Rep. Toomey asks on the House of Representatives floor, “Who thinks this stuff up? And, worse, who decides to actually fund these things? Well, unfortunately, NIH has done so.”
Eventually, many of us survived the politics of 2003 but the months of attacks on LGBT and HIV related research had left a long shadow on my colleagues. According to a later study by Kempner, some researchers even left the arena, others stopped researching hot topics, and most learned to hide their studies by avoiding using any obvious words like gay, lesbian, bisexual or transgender. In effect, LGBT health research had to go into the closet to survive.
During these years I was an idealistic new LGBT health investigator, working on my dissertation exploring the social determinants of transgender health. I remember thinking to myself… “I’m screwed. Why in the world am I training into a field that people are leaving?” Just like I learned statistics and ethics, I also learned which code-words helped hide the true nature of LGBT research. I also watched federal allies at HHS get muzzled, or moved to the career equivalent of Siberia.
Fast forward to today, a decade has passed, so many things have changed and nicely, scientists instead of politicians are the people who we again trust to judge if a health study is worthwhile.
Which is why I was particularly dismayed at the findings from a study I helped coordinate with colleagues from Boston University. The just released study, Research Funded by the National Institutes of Health on the Health of Lesbian, Gay, Bisexual, and Transgender Populations (Coulter RW, Kenst KS, Bowen DJ, Scout. Am J Public Health. 2013 Dec 12. [Epub ahead of print]), takes a big view approach to seeing how many NIH studies mention LGBT populations in some capacity. Coulter & Kenst both combed through 127k individual abstracts from NIH research funded from 1989 through 2011, looking for any hint the studies had any appreciable focus on LGBT people. We thought of all the words we could come up with, including the coded ones so widely used in past years. We suspected the study would help show gaps, and that it certainly did.
The first news was how little research there was. Over all those years, only 0.5 percent of any abstracts had any mention of LGBT populations, even if only as a variable of interest. This wasn’t a great surprise, we know that LGBT variables are not yet routinely included in data collection, which is a huge shame because it effectively masks our health problems. But beyond that, we were surprised to see how little research had been funded on LGBT issues that went beyond HIV or sexual health. Even though I think of LGBT health in terms of the range of our major health issues, tobacco use, cancer, access to care, mental health problems, youth suicide, and HIV… over 80 percent of the funded research was on HIV and sexual health. In fact there were incredibly few studies in some of our largest health areas, such as tobacco use and cancer.
There were other imbalances too, too little research on women, on transgender people, on youth, and on elders. Overall the picture was grim, we need more of all of this work.
Now 2013 has actually been a banner year for NIH taking steps in this area. In January they put out a response to the earlier Institute of Medicine report on LGBT Health. One key step was convening an LGBTI Research Coordinating Committee, which would continue to give input on strategies to make their activities large and small more inclusive. Then midyear their new LGBTI liaison, Dr. Rashada Alexander, brought researchers in for the first listening session. It was at that session that I really think some of the management “got it” — listening rapt to our cataloging of many of the barriers to our health, and our health research. Since then there’ve been more listening sessions and I know they’re doing more to outreach to LGBT youth for training and LGBT adults for careers. (If you want to hear more about a January webinar on their training and scholarship programs, follow lgbthealthlink.wordpress.com). All of these steps are exactly the stuff from which change is made. Kudos to NIH for leaning into this effort.
While I love this NIH movement, one part of our analysis showed me just how slow the change has been since the Big Chill of 2003. The graph tracking percent of all NIH studies which focus on broader LGBT health topics (beyond HIV or sexual health)… isn’t appreciably climbing. Frankly it’s hard to tell a difference in the percent of studies found in 2003 versus 2011. While I’d like to think all LGBT health research has come out of the closet and really recovered from those days when lawmakers mocked it on the House floor, once we finally crunched the numbers, the biggest takeaway is how much has not changed since 2003. The thermostat is definitely being turned up, but evidence shows it is still a chilly environment at NIH for LGBT research studies.