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SCLC Joins Coalition Urging Innovative Sickle Cell Treatment

SCLC Joins Coalition Urging Innovative Sickle Cell Treatment

April 9, 2019


The Honorable Alex M. Azar II

Secretary of Health and Human Services

200 Independence Avenue, S.W.

Washington, D.C. 20201


Dear Mr. Azar:

As organizations representing minority communities in the United States, we write today to urge the Department of Health and Human Services to examine innovative methods to ensure coverage of breakthrough, curative medical treatments. Gene replacement and cell therapies are treatments for deadly diseases, some of which disproportionately affect minority patient populations. These treatments are fundamentally different from traditional pharmaceuticals, which treat the symptoms of a disease over a patient’s lifetime, rather than offering a cure. It is imperative the federal government consider the impact gene and cell therapies could have on the health of historically disadvantaged groups when developing policies for Medicare and other public programs.

Health disparities between ethnic and racial populations stem from a larger problem of racial imbalance; white Americans live five years longer, on average, than African-Americans, and black mothers are dying from pregnancy-related complications at three times the rate of white mothers. Black and Hispanic children are nearly three times as likely as white children to have elevated blood-lead levels, a legacy of racist public housing coated with lead-based paint, and inner-city schools carrying toxic water through the fountains. Black teenagers who have experienced higher levels of discrimination, including through interaction with law enforcement, report higher levels of stress hormones and blood pressure.

In the advanced medical field, communities of color are similarly marginalized. Less than two percent of federally-funded cancer clinical trials include enough minorities to reach National Institutes of Health standards. Race has been shown to be a predictor of in-hospital mortality for certain surgeries. And genetic diseases which disproportionately affect minority populations receive less research funding and public attention than other rare diseases affecting primarily white populations.

Fortunately, more gene and cell therapies which cure, rather than treat, deadly and debilitating diseases are currently in development. Clinical trials for therapies to address hemophilia and sickle cell are underway and have shown incredible promise in saving or significantly improving the lives of the patients who have been treated. While they are costly, some scholars have found these treatments offer long-term cost savings when compared to traditional drugs or surgeries. Medicare Part B has covered some gene therapies already, a crucial step for expanding access to treatment for minority patients. Choosing not to cover treatments which would so dramatically benefit communities of color, and forcing the entire cost of these expensive therapies on patients as out-of-pocket costs, would be unconscionable. HHS must act in order to find creative coverage policies for these new treatments and embrace the positive change they represent for minority communities in America.



Southern Christian Leadership Conference

Black Women’s Health Imperative

National Baptist Convention of America International, Inc.

National Congress of Black Women

Rainbow/PUSH Coalition

Sickle Cell Disease Association of America


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