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FOR IMMEDIATE RELEASE |
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CONTACT:
Lauren Rooney |
State Rep. Lawrence Curry |
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Curry introduces bill to set hemophilia standards of care
HARRISBURG, April 18 – At a news conference at the state Capitol Tuesday, state Rep. Lawrence Curry, D-Montgomery/Phila., unveiled legislation that would set a standard of care for Pennsylvanians with hemophilia and other bleeding disorders.
“This legislation is not only what hemophilia patients want -- it is what they need,” Curry told the group of more than 70 hemophilia patients, their families and treatment providers.
Hemophilia is a rare, genetic bleeding disorder that affects about 17,000 people in the United States; an estimated 10 percent live in Pennsylvania.
In the past, patients had to endure lengthy and costly hospital stays to manage their disease. Today, most treat their illness at home through the services of the eight state-recognized hemophilia treatment centers.
Centers for Disease Control and Prevention studies show a 40 percent reduction in mortality and morbidity for patients seen at HTC’s. But access to these centers is being threatened as more insurance companies require patients to see “approved providers.” Pennsylvania hemophilia patients are worried they’ll be forced to leave the comfort of the centers and see approved hematologists who may not be familiar with bleeding disorders.
“Private insurance companies and Medicaid are desperate to cut costs and are targeting the bleeding disorders community as a place to save money,” said Kerry Fatula, executive director of the Western Pennsylvania Chapter of the National Hemophilia Foundation. “That is why it is so important to set standards of care for patients with bleeding disorders in Pennsylvania.”
Curry’s legislation (H.B. 1105) would preserve access to the following services essential to the well-being of people with hemophilia and other bleeding disorders:
- Medical services provided by the eight state-recognized hemophilia programs.
- The clinical coagulation laboratories associated with the eight state-recognized programs.
- All blood clotting products approved by the U.S. Food and Drug Administration.
- Full-service home care pharmacies and home support services.
- Mandatory medical screenings for bleeding disorders for women prior to undergoing certain surgical procedures.
“This legislation would give Pennsylvanians with hemophilia and other bleeding disorders peace of mind by maintaining access to the excellent care they receive through our state-recognized hemophilia programs,” Curry said.
Curry’s legislation has more than 60 bipartisan supporters. New Jersey has passed similar legislation.
To further shed light on the plight of hemophilia in Pennsylvania, the House today adopted Curry’s resolution (H.R. 212) designating April 2007 as “Hemophilia Awareness Month” in Pennsylvania.
For more information on hemophilia programs in Pennsylvania, visit the Delaware chapter of the National Hemophilia Foundation at www.hemophiliasupport.org, or the Western Pennsylvania chapter at www.westpennhemophilia.org.
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Attention News Editors: A print-quality photograph of state Rep. Lawrence Curry is available for download at www.pahouse.com/mediacenter.