[Congressional Record Volume 162, Number 58 (Friday, April 15, 2016)]
[Extensions of Remarks]
[Page E496]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                          WORLD HEMOPHILIA DAY

                                  _____
                                 

                           HON. TONY CARDENAS

                             of california

                    in the house of representatives

                         Friday, April 15, 2016

  Mr. CARDENAS. Mr. Speaker, I rise today to recognize April 17 as 
World Hemophilia Day and to bring awareness to Hemophilia, a genetic 
bleeding disorder that affects about 20,000 Americans. All races and 
ethnic groups are affected by this genetic disorder. In the United 
States, most people with hemophilia are diagnosed at a very young age. 
Based on CDC data, the median age at diagnosis is 36 months for people 
with mild hemophilia, 8 months for those with moderate hemophilia, and 
1 month for those with severe hemophilia. 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.
  According to the Hemophilia Foundation of Southern California, in 
that region alone an estimated 1,800 people are affected by Hemophilia 
with 31 percent of those affected being Hispanic.
  Having a chronic disease, such as a bleeding disorder, often means 
spending much time and effort negotiating. 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. It is important to acknowledge the financial burden, 
make care and treatment more accessible to Americans with Hemophilia, 
and provide comfort to those affected by the financial burden.

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