Landmarks in Bleeding Disorders Advocacy

From NHF’s founding to defending the Affordable Care Act, recall key moments in the history of bleeding disorders activism

The bleeding disorders community has a long history of activism. By mobilizing and leveraging the power of its combined voices, the community has made significant strides in improving medical care, securing funding for services and education, and safeguarding blood and blood products. Tomorrow’s victories are built on the prior efforts outlined here.

1948

The Hemophilia Foundation, Inc., is founded in New York City by Bob and Betty Jane Henry. (The organization changes its name to the National Hemophilia Foundation in 1956.)

1949

The first NHF chapter is established: The Midwest Chapter of the National Hemophilia Foundation (now Bleeding Disorders Alliance Illinois (BDAI).

1953

In Rochester, New York, Mary M. Gooley, a medical technician, Dorothy Watts White, RN, and Dorthea Golemb, a local mother whose son has hemophilia, establish a new chapter.

1959

The Rochester chapter board asks Mary M. Gooley to establish a local hemophilia treatment program, one of the first comprehensive care clinics in the nation. Mary M. Gooley serves as the center’s president from 1959 until her retirement in 1986, when the clinic is renamed the Mary M. Gooley Hemophilia Center.

1963

The World Federation of Hemophilia is formed in Montreal by Frank Schnabel, a businessman with severe hemophilia A.

1973

The Hemophilia Act of 1973 appropriates funds for the establishment of a national network of federally funded comprehensive hemophilia treatment centers (HTCs).

1982

US Centers for Disease Control and Prevention (CDC) reports the first cases of HIV/AIDS in people with hemophilia.

1985

Fourteen-year-old Ryan White of Indiana, who has severe hemophilia and who contracted HIV/AIDS from tainted clotting factor, is told he cannot return to middle school.

mid-1980s

CDC funds grassroots programs to limit the spread of HIV infection.

1986-1987

Ricky, Robert and Randy Ray, Florida brothers with hemophilia, are diagnosed with HIV and barred from attending school.

The Rays win a federal court case allowing them to return to school. About a week before school starts, an arsonist burns down their home.

1988

Ryan White, now 16, testifies before the President’s Commission on AIDS.

1989

Committee of Ten Thousand (COTT) is established as an education, advocacy and support organization for people with hemophilia, HIV/AIDS and hepatitis C.

First World Hemophilia Day observed. April 17 is chosen in honor of Frank Schnabel, the founder of the WFH.

Women’s Outreach Network of NHF (WONN) founded.

1990

On April 8, Ryan White dies at age 18. In August, Congress enacts the Ryan White Comprehensive AIDS Resources Emergency (CARE) Act, which aims to improve the quality and availability of care for underserved individuals and families affected by HIV/AIDS.

1991

Men’s Advocacy Network (MANN) of NHF founded.

NHF launches HANDI (Hemophilia and AIDS/HIV Network for the Dissemination of Information).

1992

Ricky Ray, one of three brothers infected with HIV/AIDS, dies at age 15.

1995

Following years of advocacy by community members, NHF, HFA, COTT and other organizations, the Ricky Ray Hemophilia Relief Fund Act of 1995 is introduced in Congress. It is not enacted by the end of the 104th Congress in October 1996.

An Institute of Medicine report by the Committee to Study HIV Transmission Through Blood and Blood Products recommends several measures to improve the nation’s blood safety. Representatives of NHF, COTT and the Hemophilia/HIV Peer Association testify before the committee.

1998

A reintroduced Ricky Ray Hemophilia Relief Fund Act passes Congress and is signed by President Bill Clinton. The act provides compensation to individuals with hemophilia (and their families) who were treated with HIV-contaminated factor products between 1982 and 1987.

Members of the bleeding disorders community who became HIV-positive through tainted clotting factor receive compensation through a settlement with manufacturing companies.

2008

The Genetic Information Nondiscrimination Act (GINA) goes into effect. The act protects Americans against discrimination based on their genetic information in regard to health insurance and employment.

2010

The Affordable Care Act (ACA) is signed into law. Among other benefits, the ACA prohibits insurance plans from imposing lifetime and annual dollar limits on spending to cover essential health benefits. It also stops insurance companies from refusing coverage or charging people more if they have a pre-existing condition.

2017

NHF joins with a coalition of bleeding disorders organizations to fight attempted repeals of the ACA. The attempt was unsuccessful.

2018

A Texas District Court judge rules the ACA is unconstitutional. NHF joins more than 35 patient advocacy organizations to release a statement criticizing the ruling and affirming the importance of the ACA. The case is appealed and is pending before the US Court of Appeals for the Fifth Circuit.

2019

Following an extended effort by NHF and other groups to fight copay accumulator programs, the Centers for Medicare & Medicaid Services finalizes a policy allowing health plans to implement copay accumulator programs in limited scenarios.

NHF joins 16 other patient groups representing millions of Americans with pre-existing conditions in filing an amicus curiae (“friend-of-the-court”) brief in the US Court of Appeals for the Fifth Circuit case regarding the constitutionality of the ACA. The brief urges the court to reverse the District Court ruling invalidating the ACA.

Audience