On August 5, 2009, the Pennsylvania House of Representatives unanimously passed H.B. 620, the Hemophilia Standards of Care Act with a vote of 197-0.  This is a major victory for the Delaware Valley and Western Pennsylvania chapters of the NHF and members of the community who have worked tirelessly to advance this bill in the legislature.

With passage of the House bill, the community is turning its attention to the senate version of the standards bill.  Like its House counterpart, S.B. 668 is attempting to preserve access to essential care and services needed by Pennsylvanians with hemophilia and other bleeding disorders.  Passage of this bill will ensure that health insurers cover the specialized care and services patients need, including comprehensive care provided by the hemophilia treatment centers (HTCs), the full range of clotting factor therapies, and clinical services provided by coagulation laboratories associated with the HTCs.  The bill also included provisions to ensure patients have options to specialized home support services, particularly those services provided by 340B Drug Pricing Programs and other specialty pharmacies.  Additionally, the bill mandates medical screenings for bleeding disorders for women before they undergo certain surgical procedures, such as hysterectomies, which all health plans are required to cover.

To date, New Jersey is the only state with mandated standards of care for people with bleeding disorders. Similar proposals were introduced in several other states this year, including Missouri, Minnesota, Massachusetts and Connecticut.  The Alabama chapter is also working on standards legislations, which it hopes to have introduced during the 2009-2010 legislative session.  In California, the Hemophilia Council and the chapters are making preparations to reintroduce their standards of service for pharmacy providers’ bill, which would create minimum standards for providers that dispense blood clotting factor products for use in the home.

NHF’s public policy team is also supporting a variety of other legislative and policy initiatives throughout the country to help ensure access to high-quality care for people with bleeding disorders. 

For more information on our state initiatives or to bring an issue to our attention, contact Ruthlyn Noel, NHF Manager of Public Policy: rnoel@hemophilia.org or 212.328.3730; or Michelle Rice, Regional Director of Chapter Services: mrice@hemophilia.org or 317.517.3032.