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.

I am pleased that we are at this juncture in passing S. 2465, a bill designed to help improve, treat, prevent, and conduct research on sickle cell disease and to include other blood diseases for surveillance and data collection.  While this legislation includes other blood disease, its original intent and its continuing focus is to put major emphasis on sickle cell disease and issues related to it.

I want to thank my colleagues Rep. Michael Burgess, and Rep. G. K. Butterfield, Senators Tim Scott and Cory Booker for their tireless support and efforts to bring this bipartisan and bicameral bill to fruition.  There has been a great deal of back and forth on this bill; therefore, I want to commend and thank Dr. Burgess the chief Republican cosponsor and advocate.  I want to commend the leadership on the Committee on Energy and Commerce, Chairman Greg Walden and Ranking Member Rep. Frank Pallone.  I want to highlight the work of my colleague and friend G. K. Butterfield who carried the bill for this legislation in the Committee on Energy and Commerce.  Our staff did outstanding work and I commend all of them, especially my health staffer, Dr. Caleb Gilchrist.  I want to acknowledge and to thank our advocate organizations:  the Sickle Cell Disease Association of America, American Society of Hematology, and other organizations, hospitals, providers, families and those infected with the sickle disease.

Thank you Mr. Speaker and I yield back.