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NHF Hemophilia Walk

State Priorities

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State Priorities

State Priorities

Health policy changes that affect the bleeding disorders community are happening at the state and federal level. To track issues in all 50 states and the District of Columbia, NHF works closely with local chapters, stakeholders and partners to identify issues and address concerns as they arise.

With states struggling to balance their budgets, they look at ways to modify existing programs, such as Medicaid, to help make ends meet. One way states have modified traditional Medicaid is by implementing a managed care model. This may have a significant impact on our community, particularly if they switch to using a preferred drug list (PDL) with preferred providers or reimburse factor based on a captivated rate as opposed to a traditional fee-for-service model. Thus, NHF monitors state implementation of Medicaid Managed Care, provides comment letters, or works with the chapters and state Medicaid agencies to advocate for a carve-out of clotting factor therapies from the managed care program.

Additionally, the Affordable Care Act (ACA) provided states with the opportunity to expand current income eligibility in their Medicaid program. While a majority of states have expanded their eligibility to provide coverage to those under 133% of the federal poverty level (FPL), twenty-two (22) states have not opted to, leaving many people without any coverage options. NHF continues to advocate for Medicaid expansion in those states and works with our local chapters and state legislatures to educate them about the potential impact failing to expand eligibility may have on our community. 

NHF is dedicated to advocating for uniform, set state standards for pharmacy providers. Having such standards of service will ensure that providers included in plan networks are knowledgeable and experienced in addressing the needs of persons with hemophilia or related bleeding disorders and that our community has access to necessary medication and ancillary supplies. While we have been successful in securing standards in several state pharmacy (New Jersey, California, and Missouri) and Medicaid (Alabama and Illinois) programs, we are committed to working with local chapters, associations, stakeholders and pharmacy programs to extend such successes nationwide. 

NHF works with local chapters on many of these issues to help educate elected officials about hemophilia and related bleeding disorders, and the impact of existing laws and pending legislation on the community. Local chapters’ advocacy work is a year-round, with many having a State Advocacy Day, where community volunteers, in conjunction with their chapter, meet with their elected officials at the state capitol and educate them about hemophilia and current issues impacting our community.