In this MD Newsline exclusive interview with Dr. Alecia Nero, hematologist and associate professor in internal medicine and pediatrics at UT Southwestern Medical Center, we discuss the latest research on treating sickle cell disease (SCD). We also discuss how to increase the funding, recruitment, and enrollment of sickle cell disease clinical trials.
Dr. Nero is the Director of UT Southwestern’s Transition Sickle Cell Program and Adult Sickle Cell Program. UT Southwestern is part of the Sickle Cell Disease Clinical Trials Network.
Is there any research that excites you or that you think is important for providers to know related to the treatment of sickle cell disease?
Dr. Alecia Nero:
“I’m fascinated by pretty much anything that has to do with sickle cell disease. Some of the research on curative therapies for sickle cell disease, such as gene therapy and bone marrow or stem cell transplantation, particularly excites me.
My research interests also include the reproductive issues and the transition from pediatric to adult care that our patients with sickle cell disease face. I think these issues are under-recognized, and we need more research in these areas.”
Moving forward, how do you think we can increase funding for SCD clinical trials? How can we improve the recruitment and enrollment of diverse groups in these trials?
Dr. Alecia Nero:
“I think there is a myth that patients with sickle cell disease are not interested in clinical trials and are hard to recruit and enroll. I think the bigger issue is that the medical research system was not created for them. And that’s why some sickle cell studies have issues recruiting and enrolling patients.
Our patients with sickle cell disease at UT Southwestern Medical Center are interested and eager to participate in clinical trials, and they want cures and additional therapies.
So, maybe we need to change how we approach medical research to improve recruitment and enrollment for sickle cell disease clinical trials across the board.
To increase funding for sickle cell disease clinical trials, I think we have to make sickle cell disease a priority. Let’s consider, for a moment, how hard it is to treat viruses because they mutate so quickly. Sickle cell disease is a very predictable genetic disorder. Yet, we were able to develop and deliver therapies for HIV at a much faster rate than we have for sickle cell disease. And, more recently, with SARS-CoV-2, we’ve done the same and at an even faster rate.
So, we have the ability to do phenomenal things in medicine and science, but we haven’t applied them to sickle cell disease because it hasn’t been made a priority.”
Responses have been condensed and lightly edited.