Advocacy

The first Washington Days advocacy event is held in 1996 on Capitol Hill in Washington, D.C.

In March 1986, President Reagan proclaims the month "Hemophilia Awareness Month" -- this celebratory awareness month will later become Bleeding Disorders Awareness Month.

On January 15, 1975, Sen. Edward Kennedy introduces the creation of national hemophilia treatment centers within "An Act to amend the Public Health Service Act and related health laws to revise and extend the health revenue sharing program, the family planning programs, the community mental health centers program, the program for migrant health centers and community health centers, the National Health Service Corps program, and the programs for assistance for nurse training, and for other purposes."

On March 27, 1962, Rep. John Fogarty asks Congress to increase funding for hemophilia research and treatment.

John Walstrom, the chairman of NHF, pens a letter to Congressman John Fogarty, in which he dubs 1962 "the most important year in the history of the foundation" given the "substantial appropriation for hemophilia research" in a bill that had just been passed by the House.

The Hemophilia SNF Access Act becomes law, thanks to the voices and concerns of NHF and HFA advocates.

NHF becomes an endorsing partner of the first-ever Telehealth Awareness Week.

An NHF survey found that 86 percent of all registered voters surveyed believe the government should require copay assistance to be applied to a patient's out-of-pocket costs.

Val Bias, community advocate and future NHF CEO, testifies before Congress to amend the Employee Retirement Income Security Act of 1974, hoping to increase the purchasing power of individuals and employers, to protect employees whose health benefits are provided through multiple employer welfare arrangements, and to provide increased security of health care benefits.

NHF urges Congress to provide additional funding to support AIDS research.

Thanks to NHF advocates, the Wisconsin Hemophilia Home Care Bill becomes law.

NHF successfully petitions Congress for The Hemophilia Treatment Centers Act of 1975, which authorizes federal funding to establish a network of comprehensive hemophilia treatment centers (Section 606 of P.L.94-63, amended Title XI of the Public Health Service Act) for the care and treatment of individuals with hemophilia. Hemophilia is a collection of genetic disorders that impair the body's ability to control bleeding. Common hemophilias are types A, B, and C. Von Willibrand disease is another genetic bleeding disorder included in these treatment centers. In 1976, approximately $3M are appropriated to fund more than 20 centers.

NHF advocacy leads 24 states to create funding for hemophilia programs and treatment by 1976. Nationally, Senator Edward Kennedy sponsors legislation for public law S.66 in the 94th Congress.

NHF advocacy helps the state of Illinois dedicate $500,000 in public funding toward hemophilia assistance.

NHF advocates partner with Senator Harrison Williams of New Jersey to sponsor Senate Bill 1326, the Hemophilia Act of 1973, which ultimately passes in 1975. The bill eatabliahes $3M toward a hemophilia treatment center program nationwide.

On Nov. 15, 1973, a diverse group of NHF advocates met before the Senate Committee on Labor and Public Welfare to testify and advocate for the funding of diagnosis and treatment centers.

Thanks to NHF advocacy, Pennsylvania dedicates $2M to hemophilia treatment centers.

Thanks to NHF and HANJ advocacy, in 1971, New Jersey passes a bill that authorizes the appropriation of $250,000 in state monies to be directed in establishing an assistance program for hemophiliacs.