In this MD Newsline exclusive interview with Krystal Preston, PharmD, we discuss how to improve funding, diversity, and inclusion for sickle cell disease clinical trials.
MD Newsline:
Moving forward, how do you think we can increase funding for sickle cell disease clinical trials?
Krystal Preston, PharmD:
“Sickle cell disease is a disease that affects mainly minority communities, particularly those of African or Mediterranean descent. Once we understand the impact the disease has on the community, recognize the gaps in care that these patients experience, and provide education on these issues to drug companies, healthcare facilities, and government entities, then we can move forward with more funding for clinical trials.
However, funding is not always the issue with clinical trials. Lack of participation from the affected patients is usually a major limiting factor due to previous distrust and misinformation, as we have heard about in previous government-funded clinical trials such as the Tuskegee experiment and what happened to Henrietta Lacks, and many others who aren’t as widely talked about.
Once we get a handle on those issues, I believe sickle cell disease clinical trials will be better funded in the future.”
MD Newsline:
How do you think we can increase the recruitment and enrollment of diverse groups in sickle cell disease clinical trials?
Krystal Preston, PharmD:
“Recruitment and enrollment can be increased if those conducting the clinical trials work to alleviate some of this mistrust and misinformation by being direct with patients on what the trial aims to do, explaining how they will be properly cared for during the trial, explaining the risks involved, and reassuring them that there will be proper follow-up during and long after the trial concludes.
Patients want to know if they will have access to resources in case anything happens, will they be educated on the long-lasting effects of the experimental treatments, and are they getting a realistic view on what this treatment will do for their sickle cell disease and their overall health?”
Responses have been condensed and lightly edited.
