[Congressional Record Volume 162, Number 58 (Friday, April 15, 2016)]
[Extensions of Remarks]
[Page E489]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                     HONORING WORLD HEMOPHILIA DAY

                                  _____
                                 

                         HON. RAUL M. GRIJALVA

                               of arizona

                    in the house of representatives

                         Friday, April 15, 2016

  Mr. GRIJALVA. Mr. Speaker, I rise today to recognize April 17 as 
World Hemophilia Day, a day where the international community speaks as 
one to honor the hundreds of thousands of people across the globe 
suffering from hemophilia. Now, more than ever, we must renew our 
commitment to hemophilia patients, ensure that they can receive the 
most advanced care known to modern medicine, and redouble our efforts 
to discovering new treatments--and ultimately a cure--for this 
dangerous condition.
  Hemophilia is a genetic disorder that prevents blood from clotting 
properly, making even seemingly slight injuries a terrifying prospect 
for a bleeding episode that can lead to serious injury and even death. 
While the disease is rare in statistical terms, an estimated 400 
newborns are diagnosed with the disease every year, and approximately 
20,000 hemophiliacs live in the United States at this very moment. And 
all too often, this vulnerable patient population is put into jeopardy 
by the financial hurdles obstructing access to the intensive care 
needed for combatting such a pervasive disease.
  Even with the protections put into place by the Affordable Care Act, 
too many American families are faced with the daunting challenge of 
tackling the financial burden of hemophilia--a burden that can grow to 
a quarter of a million dollars per year--alone. This World Hemophilia 
Day, I stand to speak out on behalf of the patients battling this 
complicated disease and hope that by raising awareness in this body, we 
move closer to a day where the treatment of hemophilia is practical, 
sustainable, and accessible for all Americans.

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