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Advocacy Avenue

 

 

Help Us Fight to Maintain Hemophilia Program Funding in the 2017-18 State Budget

 

There are approximately 20,000 patients with hemophilia and thousands more with other inherited bleeding disorders in the U.S. More than 3,000 reside and receive care in Pennsylvania at seven state-supported hemophilia treatment centers (HTCs), recognized as centers of excellence by the Commonwealth. The Pennsylvania HTCs are:

 

  • The Children's Hospital of Philadelphia
  • St. Christopher's Hospital for Children
  • Hospital of the University of Pennsylvania
  • Penn State Hershey Medical Center
  • Thomas Jefferson University Hospital   
  • Lehigh Valley Hospital
  • The Hemophilia Center of Western Pennsylvania

 

In 1974, Pennsylvania became one of the first states in the U.S. to establish a state hemophilia program to improve patient medical outcomes, providing annual state funds to support comprehensive hemophilia treatment centers in Pennsylvania. Since then, these programs have provided care to individuals with hemophilia and other inherited bleeding disorders, such as von Willebrand Disease, through a comprehensive model of care.
 
The Centers for Disease Control and Prevention (CDC) has studied outcomes of patients treated at hemophilia treatment centers in the United States for more than 40 years. These CDC studies demonstrate a 40% reduction in mortality and medical complications in patients who receive their care at an HTC compared with those followed by hematologists outside of this network. The overall costs of care are reduced as well.

 

100% of the Hemophilia Program Line Item in the state budget goes directly to patient care. While the funding has decreased over the last decade, it is critical preserve it to ensure the necessary comprehensive, coordinated care that patients receive at HTCs.

 

Status of the line item in the 2017-18 Budget process:

 

The Governor’s proposed 2017-18 Budget combines the line item funding for 5 separate patient programs currently managed through the Department of Health, which includes hemophilia, into a single line item now entitled Health Program Assistance and Services.

 

HB 218, the 2017-18 Budget Bill passed by the House of Representatives on April 4th, eliminated the funding for the Hemophilia Program.

 

We are asking all policymakers to reinstate the Hemophilia Program as a separate line item and level fund it at the current fiscal year amount of $959,000.

 

Call the Chapter today, and we can help you set up a meeting with your local legislator! 484-445-4282