Washington, D.C. - Congressman Michael C. Burgess, M.D. (R-TX), Congressman Danny K. Davis (D-IL), and Congressman Buddy Carter (R-GA) introduced the Sickle Cell Disease Comprehensive Care Act which would allow State Medicaid programs to provide comprehensive and coordinated care to patients with sickle cell disease (SCD) through a health home model. 

"While completing my residency at Parkland Hospital, I witnessed and cared for patients struggling with sickle cell disease. Sickle cell is a complex and complicated condition that requires access to a knowledgeable provider, care coordination, and early intervention treatment needed to combat the disease," said Congressman Michael C. Burgess, M.D. "The Sickle Cell Disease Comprehensive Care Act is a stepping stone in ensuring patients are able to take back their lives and manage their sickle cell disease through the Medicaid health home service before any additional harm to their wellbeing. I am looking forward to the great impact this bill will have on improving the lives of those living with sickle cell disease and allowing for better access to care in our communities."

“Sickle Cell is a disease that currently affects an estimated 100,000 Americans, with an additional 2 million carrying the trait,” said Congressman Danny Davis. “Furthermore, it is a disease that disproportionally impacts the lives of African Americans more so than that of any other ethnic group in the United States. Better treatments and outcomes for patients affected by Sickle Cell Disease do not happen by chance. Rather, it comes as a product of the hard work and sacrifice by countless individuals across this great nation. Every day, progress continues to be made toward the advancement of more effective forms of medical care. I know that increased resources for research and clinical trials is the key to developing more effective medication options and a cure for sickle cell disease. As a co-chair of the Congressional Sickle Cell Disease Caucus, I remain committed to championing the fight for quality health care that provides a cure for Sickle Cell Warriors and their families.”  

“Sickle Cell Disease (SCD) is a debilitating condition experienced by approximately 100,000 Americans. During my time as a practicing pharmacist, I saw first-hand the effects this terrible disease had on patients," said Congressman Buddy Carter. "The Sickle Cell Disease Comprehensive Care Act will improve quality of life for SCD patients by increasing access to high-quality care and reducing the need for costly emergency room visits, saving patients’ time, money, and, ultimately, lives.

“This bill takes an important step toward providing comprehensive care for individuals living with SCD. For too long, people with SCD have faced challenges and disparities in access to timely, equitable, and high-quality care,” said Mohandas Narla, DSc, President of the American Society of Hematology. “Access to comprehensive care remains an urgent issue for individuals living with SCD, and we commend Reps. Burgess and Davis for their unwavering commitment to legislation that addresses this problem.”


Click HERE for the statement of support from the Sickle Cell Disease Partnership.

Click HERE for bill text. 

Background: 

Sickle cell disease is an inherited blood disorder which may cause strokes, acute chest syndrome, and organ damage.  

According to Centers for Medicare & Medicaid Services about 50% of people with sickle cell disease are on Medicaid. Due to limited access to care, many SCD patients have difficulty managing their symptoms which ultimately results in costly emergency department visits and worsened health outcomes. 

Currently, Medicaid can establish care coordination for patients who have chronic health conditions including mental health problems, substance abuse, asthma, diabetes, and heart diseases.