All in for Better Health
“You’re letting them do what?” – participating in a clinical trial
Authored by:on July 22, 2015
When I was in college at Georgetown University, I began the empowering work of volunteering for medical studies. I was 19 years old and already a lifelong survivor of HIV. I did not have a need for clinical trials and having beaten the odds in many ways by my college years, I wanted a way for medicine to find out why. I participated in several observational studies for people living with HIV over the next 12 years, so that my unique story could be told through clinical research.
I am currently involved with two observational studies; participating in these studies gave me a comprehensive understanding of the research process, as I had begun to further my education in public health.
My unexpected adulthood meant I lived long enough to develop other medical conditions. I was diagnosed with endometriosis about four years ago at age 28 (the median age) after having a diagnostic laparoscopy for chronic pelvic pain. A few months post-op, my gynecologist and I decided together on a non-surgical treatment plan for my continued pain that would not interfere with my existing HIV regimen. (Women with endometriosis can also choose from different surgical options to relieve their endometriosis pain.)
Over the next three years, the treatment that I had chosen previously was becoming less effective in managing my pain. At this point, I still wanted a non-surgical treatment option since I have a compromised immune system. I also happened to be a runner and did not want to take time off from training.
It was a stroke of luck that the research coordinator from one of my current HIV studies told me she met a physician studying chronic pelvic pain in women with endometriosis in a phase I clinical trial. I was surprised to learn that having HIV was not an exclusion criterion. They explained to me that I was not going to have different perceptions of pelvic pain compared other women with endometriosis just because I had HIV.
I made the decision to be in my first clinical trial not only because it aligned with my preferences for endometriosis treatment, but also because I wanted people of my age, race, ethnicity (according to I’m In!, only 1% of all clinical trial participants are Hispanic), gender, and other demographic factors to be represented. The study will end at my one year visit this December, but I am grateful for the opportunity to add to my “medical bibliography.”