Reps. Davis, Burgess, Lee, and Carter Lead Bill H.Res. 692 to Designate September as National Sickle Cell Disease Awareness Month

Congressman Danny K. Davis, Photo provided by Davis Press Office
Congressman Danny K. Davis, Photo provided by Davis Press Office

 

Reps. Davis, Burgess, Lee, and Carter Lead Bill H.Res. 692 to Designate September as National Sickle Cell Disease Awareness Month

Washington, D.C. –  On Sept. 18, Congressman Danny K. Davis (D-IL-07), Congressman Dr. Michael C. Burgess (R-TX-26), Congresswoman Barbara Lee (D-CA-13), and Congressman Earl L. “Buddy” Carter (R-GA-01) introduced H.Res. 692, a bill to Designate September as National Sickle Cell Disease Awareness Month.  This bipartisan House Resolution recognizes the critical need for sickle cell disease research, early detection methods, effective treatments, and preventative care programs with respect to complications from sickle cell disease and conditions.

Since its discovery in 1910 over a century ago, Sickle Cell Disease (SCD) remains a mystery in its affects upon persons from African origins.  The enactment of the landmark National Sickle Cell Anemia Control Act of 1972 created important federal programs to address the need for disease awareness, research, and treatment, as well as counseling and screenings.  Half a century later, medical advances are on the verge of Food and Drug Administration (FDA) approval for a functional cell and gene therapy that will enable patients to live longer with a better quality of life devoid of vaso-occulsive crisis.  Given the myriad of challenges faced by patients living with Sickle Cell as we rapidly approach the 51st Anniversary of passage of the National Sickle Cell Anemia Control Act, the designation of September as National Sickle Cell Disease Awareness Month is a way of honoring those Warriors who fight daily for to defy medical odds to live a normal life for themselves and their families.

SCD is caused by an inherited genetic mutation which affects a person’s red blood cells causing them to become C- or sickle-shaped. This prevents vital oxygen flow throughout the body;  Subsequently, leading to serious health complications including severe pain, stroke, organ damage and failure, resulting often in premature death.

“Sickle Cell is a disease that currently affects an estimated 100,000 Americans, with an additional 2 million carrying the trait,” said Rep. 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.”  

“During my residency at Parkland Hospital in Dallas, I witnessed the resilience and strength of countless sickle cell patients,” said Michael C. Burgess, M.D. “For almost 40 years there was little advancement in treatment for these patients, leaving them with insufficient therapies and support. That is why it is so important to designate September as Sickle Cell Awareness month. We will continue to raise awareness and work towards a cure for this devastating disease. I am thankful to my colleague and steadfast advocate for sickle cell, Danny Davis for standing with me in this important resolution.”

“I’m proud to join my colleagues to support research and ensure access to testing and lifesaving information for people affected by Sickle Cell Disease,” said Rep. Barbara Lee.  “This month serves as a time to encourage awareness among those living with Sick Cell Trait about testing, treatment and care options--especially in communities of color and those who are medically underserved.  It also should spur us to drive faster towards finding cures.”

“As a pharmacist, I understand the heartbreaking toll sickle cell disease takes on patients and their families. Unfortunately, Georgia is home to one of the largest sickle cell disease populations in the country, which is why it’s so important that we act quickly to save lives and prevent further pain. This resolution sends a clear signal that the federal government is committed to supporting patients living with sickle cell disease and will continue to enact policies that encourage increased research and development for a cure for this life-altering disease,” said Rep. Carter.

For more information on Sickle Cell Disease, visit the www.sicklecelldisease.org.

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