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Davis Statement Prior to Passage of HR 2410 Sickle Cell Disease Research, Surveillance, Prevention and Treatment Act of 2017

02/26/18

Congressman Danny K. Davis
Floor Statement
United States House of Representatives
February 26, 2018
H.R. 2410-- Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act of 2017


Mr. Speaker, 

Sickle cell disease is an inherited blood disorder characterized by affected red blood cells that mutate into the shape of a crescent or sickle, and as such these cells are unable to pass through small blood vessels.  It is a recessive genetic condition that occurs when a child inherits two sickle cell genes- or traits- from each parent.   

The consequences and complications of this disease are extreme. According to the Sickle Cell Disease Association of America, Inc., whom we have worked with for many years on this legislation, have studied and reported that common complications with this disease include early childhood death from infection, stroke in young children and adults, lung problems similar to pneumonia, chronic damage to organs including the kidney, leading to kidney failure, and to the lungs causing pulmonary hypertension, and severe painful episodes. In fact pain episodes are a hallmark of sickle cell disease. They are unpredictable in many ways, both the timing of when they occur, how severe they will be and how long they will last. For those with the disease, these devastating pain episodes can start as early as six months of age and can span a lifetime, impacting school attendance and participation in the workforce. In fact, these pain crises contribute significantly to the 200,000 emergency room visits collectively made by sufferers of sickle cell disease each year in our country. A typical crisis will result in a hospital stay of seven to ten days.  

More than 2.5 million Americans have the sickle cell trait.  The sickle cell trait is found in 1 of 12 African Americans.  There is a 1 in 4 chance that a child born to parents who both have the Sickle Cell Trait will develop the sickle cell disease.  The average life span for an adult with the sickle cell disease is 45 years.    The Sickle cell disease affects an estimated 100,000 Americans, primarily African Americans and Hispanics, and other ethnic groups.  
H.R. 2410--Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act of 2017, is a bill to reauthorize and improve upon the HRSA demonstration program as it relates to treatment and prevention.  It would expand, coordinate and implement transition services for adolescents with sickle cell disease making the transition to adult-focused health care.  H.R. 2410 would establish a new surveillance grant program that covers and improves the current estimates about the incidence and prevalence of the disease and identify health disparities, risk factors, which impact health outcomes. 

Mr. Speaker, I would also just note that the devastation of this disease on those who are affected by it is, indeed, tremendous.  I have had firsthand experience with it by virtue of having run a sickle cell community education project for the University of Illinois in Chicago and came in contact with many of the patients and their families; saw the pain and suffering firsthand. 

I want to thank Rep. Michael Burgess who has been my bipartisan partner in this effort continue to help tens of thousands of Americans who suffer from this dreadful disease and Rep. G.K. Butterfield for all his support and dedication to this important issue.

Mr. Speaker, I encourage all my colleagues to vote yes for H.R. 2410, the  Sickle Cell Disease Research, Surveillance, Prevention, and Treatment Act of 2017.

Thank you!

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