Evelyn Olansky, MPH, is a transgender subject matter expert and Data Analytics Specialist II at ICF. She works as a contractor assigned to the Behavioral Surveillance Team, in the Behavioral Case Surveillance Branch, Division of HIV/AIDS Prevention, Centers for Disease Control and Prevention (CDC), serving as a project coordinator to the team.
You have a diverse academic background, including psychology, linguistics, anthropology, and public health. What drew you to work in the field of HIV?
My path to the field of HIV was not very direct. In general, I was trying to understand people. That is where my interests in psychology, linguistics, and anthropology stem from. From 2009-2013, I was working with CDC as a fellow. I had a good partnership working in broadcast (the Division of Communication Service’s Broadcast branch) there and was learning about public health when they offered to support my tuition to pursue a degree in public health. Everything really came together for me when my professors were talking about transgender people. It was the first time that I heard other people describe transgender people in human terms. It was a personal experience, as I finally felt I had the right to identify as trans now that I had a description of trans people other than the typical media portrayal. That was the beginning of my MPH program and the beginning of exploring and declaring my identity to the world. That timing, coupled with seeing the disproportionate problems faced by trans people, made it easy to know the direction I wanted to take.
A 2014 report from amfAR found that trans women were 49 times more likely to have HIV than other women. What are some reasons for this stark disparity?
It is very important to look at social determinants of health to understand the disparity, though for a long time people tried to explain it only with stereotypes. There was a twisted sense that trans women were associated with sexual proclivity and lack of judgment, and a bias to blame them entirely.
Only recently, as we have started to look for social determinants, we see the risks multiply and amplify. When we look at factors like social support, family support, religious/spiritual support networks, and school or workplace safety, we can see how situations stack up against trans women. Cisgender people often take access to safe and inclusive support networks for granted.
Furthermore, it’s a lot more difficult to build healthy habits if you do not believe that you are worth being healthy. A lot of trans people internalize toxic messages conveyed by bigotry and discrimination. Messages that say that trans people aren’t worth the effort to be healthy; that they are an afterthought in health. That hurts people. That can lead a lot of trans people to make unworthy choices because there is so much societal pressure to believe that they are unworthy. It takes a lot of resilience to fend off the negativity and to avoid internalizing the message.
Aside from overt discrimination, there’s also the issue of all health promotion materials related to preventing HIV being written with cisgender men and cisgender women in mind. It fails to educate trans people and further sends the message that they are not worth the consideration of having targeted health promotion materials. When the same people that are saying, “don’t have unprotected sex,” are also the same people who say, “don’t be trans,” it is very difficult to know which advice to follow and which advice to disregard.
You recently served as lead interviewer on a study on stigma, trauma, and stress in transgender women. How do these factors contribute to the high rates of HIV among transgender women?
In that Georgia State University study, not only did we look at social determinants, we also collected saliva in order to measure chronic stress. As background, a biomarker for chronic stress is telomere length. Although this study did not follow these women for a long period of time, looking at the telomere data allowed us to match their self-reported history of trauma, resilience factors, and social factors against their apparent chronic stress. We were able to confirm with both personal reports and biological data that transwomen were experiencing high rates of stress, stigma, and trauma. That stress can be explained by social determinants of health, which push transwomen outside normal treatment channels and into isolation, leading to high rates of HIV.
There is currently still a lack of reliable data on HIV in the transgender community. Why is this the case, and how can we encourage more data collection?
There are many answers to this question, but the most succinct way to explain the lack of reliable data on HIV in the transgender community is a lack of trans representation in the development and deployment of research. It has taken far too long for transgender people to represent a majority of advisors on these groups running research. Before, about 20 years of trans research was advised and guided by cisgender experts on trans people. There have been plenty of trans surveys that have stigmatizing language and framing. You cannot get high-quality data if the study staff that is collecting that data are not trained in cultural competency. This is something that would not be missed with a trans person on the staff. If you don’t have trans people available, your ability to be dynamic and make quick and accurate decisions is slowed down. Therefore, we can encourage more data collection by including transgender people in the data collection process and making the studies culturally competent.
You have also focused on finding ways to include transgender populations in HIV behavioral surveillance instruments. How are transgender populations currently excluded from surveillance methods, and what can be done to remedy this exclusion?
The primary barriers to including trans people in HIV research is a social barrier. We have the science, we have enough information to make excellent trans studies, and yet the systems that support the implementation of that science are not aligned to it yet.
To remedy this exclusion, there are small, practical solutions. One of the major barriers is that all of the foundational work in HIV, moreover, all of the foundational work in public health, was done with no conception of trans identity. Programs and surveys often build on the advantage of pre-existing materials, therefore with trans work, finding a survey instrument that has already been validated is much more difficult because the previous work does not acknowledge trans people and therefore cannot be adapted for transgender-focused studies. Due to the extra time, money, and effort needed to create new measures, the best thing to remedy the exclusion of trans people from research and surveillance is to ensure inclusion in everything, particularly the Census. The problem is that instruments that are designed for trans people are made for the particular moment, whereas materials that are made for cisgender people are made for general situations. There will always be a cap on the quality of trans research until they have something like a census-based denominator.
As a member of the transgender community yourself, what is your message to the community on National Transgender HIV Testing Day?
It is difficult for me to come up with a singular message to the transgender community because they are one of the most internally diverse groups I’ve ever had the privilege to interact with and research. That being said, my message is to take care of yourself, and then worry about the rest of the world. There’s a motivation to try and fix all parts of the world, but sometimes that makes it harder. Start with taking care of yourself before moving on to tackle bigger issues.
So often society sends the opposite message, “don’t take care of yourself, you’re not worth it,” and that gets internalized. There are a lot of problems in the world that are going to need as many hands-on-deck as possible to fix, but you have to survive in order to get to the point where you can help fix things. It’s like what they tell you on an airplane if you have a child: put your oxygen mask on yourself first, and then anyone you are taking care of. That’s my message here. Take care of yourself, you are worth it. Then, if you feel called to do so, you can work to take care of those around you.