My Thoughts: Faces of Sickle Cell: Include Us in Clinical Trials

I talk with young adults living with sickle cell disease and with parents caring for their children with sickle cell disease. They are in and out of hospitals, more encounters with the health care system than they can count or care to remember. So how is it that they go for years without anyone approaching them about a clinical trial? This is much more common than one would think. 

 Are the biases of old just that? Old. No patient or caregiver I speak with lets these hold them back. Maybe they are just convenient excuses for very real and current biases of our providers? Our researchers? Our institutions? Perhaps we need to challenge our doctors rather than our patients to improve enrollment? Instead of blaming enrollment woes on African American cultural biases, maybe we see what happens when we talk to sickle cell patients about clinical trial options when they're in the hospital, in their physician's office or clinic? Yes, we need to approach the conversation with caution, but perhaps not any more so than with any other patient who is at least as invested in finding a cure as any researcher. 

Read Isabel Estrada-Portales article "Faces of Sickle Cell: Include Us in Clinical Trials."