According to a story from Mother Jones, patients of black or Native American backgrounds are consistently underrepresented in clinical trials. This occurs even when the trials are for diseases that disproportionately affect them. This can have major impacts on the effectiveness of a drug if it gets approved, as patients of these backgrounds may have different disease presentations compared to whites and may respond differently to a treatment.
Underrepresented, Undertreated
Take for example the clinical trial for the drug Ninlaro. Ninlaro is a treatment for the rare blood cancer multiple myeloma. One in five patients with the disease in the US is black, but only 13 percent of the trial’s participants were black.
About Multiple Myeloma
Multiple myeloma, which is occasionally referred to as plasma cell myeloma, is a blood cancer that affects plasma cells. These are white blood cells that produce antibodies. The overall cause of multiple myeloma is not well understood, however, some risk factors have been identified. These include obesity, family history, smoldering myeloma, and monoclonal gammopathy of undetermined significance. These last two conditions have the potential to develop into multiple myeloma. Symptoms of this cancer include bone pain, infections, anemia, kidney failure, overly thick blood, confusion, fatigue, headaches, and amyloidosis. Treatment includes chemo, stem cell transplant, and other medications for relapsed disease, which is common. Five year survival rate is 49 percent in the US. To learn more about multiple myeloma, click here.
Clinical Trials Leave People of Color Behind
As a whole black patients get diagnosed with blood cancers of all kinds at almost twice the rate of whites. The absence of people of color in clinical trials is just one more manifestation of racial discrimination in the health and medical field. The consequences of the absence of black people in trials is ultimately less effective treatment for black patients. Along with the possibility of a therapy simply not working as well in black patients, signing up for a clinical trial may often be the best chance a patient has for staying alive, particularly if no other currently available treatments are working for them.
Some factors that may prevent black patients from participating in clinical trials include financial constraints, an overall lower level of trust of modern medicine within the black community (thanks to racial bias and a history of abuse of black people in the medical system), and other logistical difficulties.
People of color consistently trail behind whites in a variety of health metrics, and poor representation in clinical trials is just one reason for this. The participation of patients in different racial groups in a clinical trial should be reflective of the racial composition of the patient population for the given disease.
