NBCSL Urges Policy Changes to Better Treat Sickle Cell Disease


January 20, 2022


The National Black Caucus of State Legislators prioritizes improvement in sickle cell disease as a top health care initiative and calls on state and federal lawmakers to improve data collection, quality care and access to new treatments for sickle cell disease

WASHINGTON, D.C.—The National Black Caucus of State Legislators, the nation’s top organization representing the interests of Black elected officials, is urging state and federal policymakers to focus on improving care for patients diagnosed with sickle cell disease.

Sickle cell disease is a severe, life-shortening condition that causes a person’s body to produce abnormally shaped red blood cells resembling a crescent or a sickle. These sickle-shaped blood cells do not last as long as normal round red blood cells, which leads to anemia. They can also get stuck in blood vessels and block blood flow, which can cause severe pain, organ damage and infection.

The Center for Disease Control and Prevention estimates that sickle cell affects more than 100,000 people in the United States, predominantly people of color and especially African Americans.

“Very little attention and few resources have been dedicated to treating sickle cell since the underlying cause of the disease was discovered more than a century ago,” said Sen. Raumesh Akbari, the financial secretary for NBCSL and a state senator from Tennessee. “It’s time for us to come together and recommit ourselves to erasing the inequities in our healthcare system that have left behind so many families living with sickle cell.” 

NBCSL unanimously approved a resolution in December by NBCSL members that highlights the great need for improved care in sickle cell will be shared with state and federal policymakers, according to Tennessee Rep. Harold Love, who serves as the group’s vice president.

“A recent study estimated that the life expectancy for individuals with sickle cell disease is 54 years; we cannot continue to accept this loss of life,” said Rep. Love. “As policymakers, we must do a better a job of connecting the medical community, stakeholders and patients so that potentially life-saving care and information has the most potential to do good.” 

Rep. Love says NBCSL urges state and federal policymakers to prioritize increased access to new and innovative sickle cell treatments and expand data collection efforts to gain a clearer understanding of how many people are affected and how the disease affects communities.

As part of the National Black Caucus of State Legislators’ commitment to push for improvement in sickle cell disease it urges that the Centers for Medicare and Medicaid Services ensure that individuals with sickle cell disease have access to all medications and forms of treatment for sickle cell disease.

NBCSL also calls on Governors and state Medicaid programs to ensure access to innovative treatments and services and determine if their state is adequately meeting the needs of enrollees who have a sickle cell diagnosis and to study care and treatments not currently covered.

The full text of the resolution can be viewed here.