Press Releases

Congressman Tim Kennedy (NY-26) announced the House of Representatives passed the Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act (HR3884). The legislation reauthorizes the federal program dedicated to Sickle Cell Disease research, prevention, and treatment through fiscal year 2028 and increases federal funding from $4.445 million to $8.205 million annually.  

(Congressman Kennedy celebrates passage of H.R. 3384 on the House floor.)

In remarks on the House Floor, Congressman Kennedy said, “I am proud to support this critical legislation to reauthorize federal efforts to research, prevent, and treat sickle cell disease through 2028. Sickle cell disease is an inherited genetic blood condition, affecting approximately 100,000 Americans and a million people around the world.” 

Kennedy highlighted his personal connection to sickle cell disease, saying, “As a clinical nurse specialist caring for sickle cell patients, my own mother knew firsthand the hardships stemming from this terrible disease, including pain, anemia, infections, and stroke, as well as kidney, liver, and heart disease.” 

He concluded by saying, “During Sickle Cell Awareness Month this September, the legislation passed in the House will honor the resilience of those affected by this disease, advance important research to improve treatment options and help ensure equitable access to care for all patients.”

Additional Information: 

Sickle Cell Disease is a genetic condition, which disproportionately impacts Black and Latino populations, causing red blood cells to become sickle-shaped. In New York State, one of every 365 Black babies are born with sickle cell disease, while one in 13 Black babies are born with the sickle cell trait. The disease causes pain and other severe health complications, decreasing life expectancy among those affected by 20 years. According to the U.S. Department of Health and Human Services, approximately 100,000 Americans are living with Sickle Cell Disease.

September is recognized as National Sickle Cell Awareness Month. For more information on Sickle Cell Disease, including additional steps being taken by the federal government, visit the U.S. Department of Health and Human Services website or the Centers for Disease Control website at: www.cdc.gov/sickle-cell/. 

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