| Last year I had the chance to go behind the scenes in the making of a clinical trial.
My editor asked me to think about applying to the Community Constituency Group (CCG) of the Adult AIDS Clinical Trials Group (AACTG). We thought it would be a good experience to see how the studies I report on are actually put together.
But when I was accepted and got to the CCG, I felt that I had one overriding concern: recruiting women and people of color into clinical trials.
I strongly believe that people of color working in HIV must lead the way in advocating for study enrollment from our communities.
We should teach our communities how to access care and be on the inside track of so many benefits out there. We must speak up and help people to get over our fears. I don’t have HIV, but if I did, I would not be expecting some Dr. Frankenstein to be taking me down. But then, I sit at the table with HIV researchers and see that they’re not monsters. If anything, I believe HIV doctors, more than any other doctors, are trying to save lives with all of their heart and soul. As a Puerto Rican woman, I’m not without suspicion. I know that U.S. doctors conducted unethical research on the island as well as a mass sterilization campaign without letting women know they were being sterilized. I would always watch my step—no doubt!
But for the most part, that was then and this is now. We have a lot of safeguards that were put in place after the abuses of the past. It hurts me to see so many doctors, nurses, pharmacists and other medical providers with hearts of gold—people of all races and ethnic groups—struggling to serve underrepresented communities, and sometimes to enroll them in clinical trials. They work in such good faith, and we still struggle to have representation in all our trials across the country. We’re letting them down and making their job difficult—the job of finding a cure. Having met and talked with nurse practitioner Bethsheba Johnson and her husband Dr. William Johnson, it’s inconceivable to me that anyone would think they would use some kind of poisonous concoction on their fellow African Americans. They’re trying desperately to save lives in their communities, as are African American providers across the country (and providers in both poor and wealthier communities whatever the racial and ethnic makeup). Sometimes the Johnsons are waging a battle against the powers that be. They’re trying to secure resources that are not available in the poorest neighborhoods. They need the support of the community. Dr. Kimberly Smith of Rush University Medical Center, near Chicago’s downtown, is struggling to establish the Johnsons’ clinic as an outpost of the ACTG, in keeping with the ACTG movement to spread their efforts out of huge white institutions and into smaller clinics out in the community. Will people enroll? When I mentioned to Bethsheba Johnson that I had never had the privilege of meeting her mentor and how impressed I was with her clinic, tears welled up in her eyes. “Sherry Luck was a wonderful doctor,” she told me in her soft, lyrical voice, “and we hope we can continue her legacy to serve this community.”
I hope we do what we can to help the Johnsons run their clinic with the best the world has to offer. In this special issue of PA, we do not have all the answers for how to bring our communities up from under. As CCG leader Wil Strain notes in his essay here—among other things—lack of study involvement goes hand in hand with lack of access to care overall. As new columnist Keith Green says—among other things—we’re dealing with stigma that is killing us. These are complicated issues. Many thanks to Edd Lee, Eva Powell, Matt Sharp and Wil Strain for their “clinical” contributions and, of course, to Charles, for loaning me his column. I hope this edition serves one simple purpose—to let you know that we believe in clinical trials, and that we encourage you to believe in them too. I know for sure that as you reach out to support groups, educational forums and clinical trials, you will learn about all kinds of things you can benefit from.
Get access.
Enid Vázquez
Clinical Trials Editor
Send comments and reactions to enid@tpan.com |
