A new report is calling on the National Institutes of Health to designate sickle cell disease a health disparity to help accelerate research on the inheritable disease, which primarily impacts Black Americans and has received relatively little attention within the scientific community compared to other diseases.
In September, the National Academies of Sciences, Engineering and Medicine released “Addressing Sickle Cell Disease: A Strategic Plan and Blueprint for Action,” which offers eight strategies for improving care for people with the disease, of which there are about 100,000 in the U.S. Sickle cell disease distorts a person’s red blood cells, which prevents the normal delivery of oxygen and can cause debilitating pain, bone deterioration, strokes and organ failure.
However, due to long-standing inequities and systemic racism, “individuals with (sickle cell disease) have suffered from a lag in the development of treatments and cures as well as an often-strained relationship with health care providers and limited resources for advocacy efforts,” the report said.
Among its many recommendations, the report calls on NIH to designate sickle cell disease a disparity to incentivize research, and urges the U.S. Department of Health and Human Services to fund efforts that identify and mitigate disparities in sickle cell mortality and health outcomes. The report also recommends enhanced medical and social supports to help people with sickle cell disease transition from pediatric to adult care, new payment models for current treatments and those in development and more funding for research on non-opiate and palliative pain management approaches.
The report noted that historically, sickle cell disease had been considered a childhood disease and much of the related research focused on improving pediatric care. But with many more sickle cell patients surviving into adulthood, new efforts are needed to ensure a safe transition out of pediatric care and into adult care.
The report’s strategic plan also has seven foundational principles—including safe, effective, timely, equitable and ethical—which the committee said it added “due to the history of marginalization and racism experienced by the majority of the affected population.”
“People with sickle cell disease show incredible resilience,” said Marie McCormick, M.D., professor emerita of maternal and child health at the Harvard T.H. Chan School of Public Health and chair of the report’s authoring committee, in a news release. “They often have to become their own advocate to get the treatment and services they deserve—whether in the health care system, at school, at work or in the community. We hope this report spurs policy changes that improve the quality of life for people living with (sickle cell disease).”
From The Nation’s Health