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, Hospital of the University of Pennsylvania, Thomas Jefferson University Hospital, The Hemophilia Center of Western Pennsylvania, St. Christopher’s Hospital for Children, Penn State Hershey Medical Center, and Lehigh Valley Hospital.

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 need your help! Please contact your legislators!

 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.  

Click here to find your legislator

Tips for talking to the legislative offices on the Hemophilia Program line item:
If Talking to Representative or staff member

After explaining the importance of the HTCs to you and your family:

  • Acknowledge that you understand that they passed a Budget Bill (HB 218)
  • Express your disappointment that the Bill did not fund the Hemophilia Program
  • Ask for their support as you are working with the Senate to restore the funding
    For example:

We were extremely disappointed that the Budget Bill passed by the House eliminates the Hemophilia Program line item and funding. This money is critical to patient care by supporting the seven Pennsylvania Hemophilia Treatment Centers in PA.

We are working to reinstate this funding in the Senate and ask for your help. You could do this by talking to your Caucus Leadership or your Senate colleagues about the importance of the funding and also by supporting the line item as the process of passing the 2017-18 budget continues.

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.

If Talking to a Senator or staff member

After explaining the importance of the HTCs to you and your family:

  • Draw attention to the fact that the line item and funding was eliminated in HB 218
  • Ask for their support to reinstate the separate line item and funding at the current fiscal year level
    For example:

We were extremely disappointed that the Budget Bill passed by the House eliminates the Hemophilia Program line item and funding. This money is critical to patient care by supporting the seven Pennsylvania Hemophilia Treatment Centers in PA.

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