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Advocacy Priorities


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Advocacy Priorities

Advocacy Priorities

The National Hemophilia Foundation (NHF) has advocated for the needs and interests of people affected by hemophilia and other bleeding disorders for almost 60 years. In this role, we have educated elected officials and others in government about the unique needs of people with bleeding disorders. As a result of efforts at the federal level, millions of dollars in government funding has been used to improve medical care, services, education, and safety and surveillance of blood and blood products.

In 1998, NHF was instrumental in securing passage of the Ricky Ray Hemophilia Relief Fund Act, which provided compensation to individuals (and their families) who acquired HIV from contaminated clotting factor products. Since then, NHF’s advocacy efforts have raised awareness of bleeding disorders, protected individuals from discrimination and ensured full access to high-quality care.

On the federal level, NHF’s annual Washington Days provides an opportunity for the community to come together to discuss key issues affecting access to care, learn about advocacy, meet with elected officials and put a face on bleeding disorders.  We continually monitor issues on the federal level and update our advocacy priorities as issues arise, such as ensuring funding for federal hemophilia programs and research, US Food and Drug Administration- (FDA) related issues, including blood and blood product safety, and protecting access to affordable, quality care and treatment.

However, the advocacy efforts of NHF reach beyond Washington, DC, and Capitol Hill. We also work closely with chapters and associations, as well as with other key stakeholder groups across the country, to address community needs on the state and local levels. We provide training, guidance and strategic planning to state chapters and coalitions that focus on the importance of a comprehensive advocacy program that includes a state advocacy day.  By uniting, mobilizing and leveraging our collective resources, we have made significant strides in shaping policies that affect the interests of people with bleeding disorders.

NHF's public policy team also continually monitors issues on the state level for advocacy priorities purposes and examine how issues such as transitioning to managed care in state Medicaid programs, Medicaid expansion under the Affordable Care Act, and healthcare reform implementation (federal and state) affect the bleeding disorders community.   Further, we continue to work with state governments to establish standards of service to ensure quality of care for our community.

You can help us make a difference. Start right here by learning about critical issues facing people with bleeding disorders. Join us to raise awareness, and promote the best practices and policies in your state.