[Congressional Record Volume 162, Number 35 (Thursday, March 3, 2016)]
[Extensions of Remarks]
[Page E271]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




          IN RECOGNITION OF MARCH AS BLEEDING DISORDERS MONTH

                                 ______
                                 

                            HON. DAVID SCOTT

                               of georgia

                    in the house of representatives

                        Thursday, March 3, 2016

  Mr. DAVID SCOTT of Georgia. Mr. Speaker, I rise today to recognize 
March as the first Bleeding Disorders Awareness month. As my colleagues 
may know, bleeding disorders are a group of diseases which affect more 
than three million Americans and which have no known cure. These 
diseases, which include hemophilia, Von Willebrand disease or VWD, and 
other rare disorders, can take a heavy toll on their sufferers' 
standard of living and finances. However, despite these troubling 
realities, by raising awareness, it is my hope that through earlier 
diagnosis, we might prevent more complications, unnecessary procedures, 
and disabilities so often caused by these diseases.
   The most common bleeding disorders, hemophilia and VWD, are 
hereditary and caused by disorders in blood proteins meant to clot and 
stop bleeding. According to the Centers for Disease Control, as many as 
400 babies are born with hemophilia each year. For hemophilia 
sufferers, their illness means that they require lifelong infusions of 
replacement clotting factor therapies. The financial burden for 
individuals with severe hemophilia are often $250,000 a year or more. 
While the affordable care act limits annual out-of-pocket expenses to 
$6,850 for individuals and $13,700 for families, the high cost of 
clotting factor therapies means that those afflicted with the disease 
often pay these full amounts each year.
   In the past we have seen just how vulnerable sufferers of bleeding 
disorders are to complications. When the nation's blood supply became 
contaminated with HIV during the 1980's, almost 90% of severe 
hemophilia sufferers became infected. Of those cases of HIV 
transmission, over 50% have since died of the disease.
   Despite these tragic outcomes, there is reason for optimism. Thanks 
to federally funded Hemophilia Treatment Centers (HTCs), originally 
authorized by Congress in 1974, as many as 70% of hemophilia sufferers 
take advantage of specialized treatment through the multidisciplinary, 
comprehensive care in a network of HTCs. According to the CDC, 
mortality rates and hospitalization rates for bleeding complications 
from hemophilia were 40% lower among Americans who received treatment 
at HTCs. I am proud to say that Georgia hosts a total of four HTCs.
   In addition, organizations such as the National Hemophilia 
Foundation have made it their mission to continue to raise awareness 
about rare bleeding disorders in the United States and abroad. So Mr. 
Speaker, today I rise to recognize those who suffer from bleeding 
disorders and those who continue to work to create greater awareness of 
bleeding disorders.

                          ____________________