Press Releases

Today, Congressman Tim Kennedy (NY-26) announced new resources from the Social Security Administration designed to assist individuals with Sickle Cell Disease, their families, and healthcare team in navigating the process of applying for and receiving disability benefits. Find new resources to assist children, adults, and healthcare providers on how to receive disability benefits here, here, and here. 

“Sickle cell disease is an inherited genetic blood condition that can make everyday life difficult for roughly 100,000 Americans and a million people around the world,” said Congressman Timothy Kennedy. “These new resources will improve lives by empowering patients, their families, and their physicians to better understand and secure the benefits and support they deserve.”

Background Information:

In September 2024, Congressman Kennedy applauded the House of Representatives for passing the Sickle Cell Disease and Other Heritable Blood Disorders Research, Surveillance, Prevention, and Treatment Act (H.R. 3884). The legislation reauthorizes the federal program dedicated to Sickle Cell Disease research, prevention, and treatment. Learn more here.   

In December 2023, while serving as a member of the New York State Senate, Congressman Kennedy joined doctors at Roswell Park Comprehensive Cancer Center to call on the New York State Department of Health to expedite Medicaid coverage approval for a groundbreaking gene therapy that serves as a cure for Sickle Cell Disease. Learn more here.

Information About Sickle Cell Disease:

Sickle Cell Disease is a genetic condition that causes patients to experience a shortage of red blood cells, due to abnormally shaped hemoglobin. According to the Centers for Disease Control and Prevention, symptoms can include sudden mild to severe pain episodes, blockage of blood flow to the lungs, long-term eye damage, and increased susceptibility to infections, among other complications. Children with Sickle Cell Disease may start to have signs of the disease during their first year, usually around 5 months of age.

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.

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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