A Moment in History for Bleeding Disorders

By Emily A. Roush-Bobolz, staff writer

This year marks a historic year in the story of bleeding disorders—Hemophilia Federation of America celebrates 30 years as an organization, and it’s been 25 years since the Ricky Ray Hemophilia Relief Fund Act provided compensation for patients infected with HIV from contaminated products and provided protection from certain payments from being considered income in determining eligibility for assistance. 

New Kid on the Block

What began as a group of concerned patients and family members meeting in a modest home on Beaujolais Parkway in a tiny town in Louisiana, has grown into a national organization in Washington, D.C., that continues to advocate for those with bleeding disorders to this day. 

What you hold in your hand is Dateline Federation magazine, which grew to a full, professionally designed magazine, from a small little paper newsletter made by volunteers in that home. 

That first newsletter stated “Hemophilia Federation is an advocacy organization for persons with clotting disorders and their families of origin or choice. That means the entire hemophilia community—those with HIV, those with hepatitis, those who were lucky enough to come through the holocaust unscathed, and those new patients who have not had to deal with the possibilities. We were formed to fill the perceived gap in services to this community which were not being met.”

In the 1980s, some 90% of patients with hemophilia were becoming infected with HIV through their factor products. Additionally, almost all patients with hemophilia who used factor products before 1988 were infected with the hepatitis C virus (HCV). 

Blood-borne infections were a major complication of treatment for people living with hemophilia, and the tragedy resulted in the loss of thousands of lives. People like this small group of concerned patients in that Louisiana home wanted change. They organized and in 1994 Hemophilia Federation of America was incorporated to become a voice and advocate for the bleeding disorders patient and caregiver community.

“It has not been our intention to replace The National Hemophilia Federation (renamed National Bleeding Disorders Foundation in 2023),” said the first HFA newsletter, “Perhaps the time has come when more than one advocacy group is needed to cover all the bases.”

In the 30 years since its incorporation, HFA grew to a $5 million organization with 36 employees, 52 member organizations across the U.S., and serving thousands of patients and their families in the 2010s. As new treatments became available and funding for organizations like HFA changed, the organization scaled back to a steady 16 employees and 44 member organizations (some state organizations disbanded). But one thing remains—advocacy and education for thousands of patients and their families continues. 

Remembering Ricky Ray

Ricky, Robert and Randy Ray were brothers with hemophilia who contracted HIV from their factor as young boys. Because of their diagnosis and the fear and stigma surrounding it, they were forced out of school. They were later offered a segregated space, away from other students, but the family chose to instead sue the school district for segregation. Federal courts ruled against the district and allowed the children to attend public school despite their diagnosis. But the Rays’ home was burned down less than a week later. 

Ricky became one of the faces in the fight against the stigma of AIDs and allowed news reporters to follow his decline in health. He passed away in 1992 from complications relating to AIDS and hemophilia at the age of 15. According to reports, Ricky wrote to presidents Ronald Reagan and George H.W. Bush to consider increased funding for AIDS research. After his death, President Bill Clinton vowed Ricky’s voice would continue to be heard and presented Ricky with a posthumous award for AIDS activism. 

Twenty-five years ago, lawmakers passed the Ricky Ray Relief Fund Act, which provided payments of $100,000 to people with blood-clotting disorders who contracted HIV
through the use of tainted products administered between July 1, 1982 and Dec. 31, 1987. The law also provided payments to those who contracted HIV from these individuals, such as
a spouse or a child.

The act also prohibited settlement payments under class action lawsuits from being considered income or payments under Title I of this Act from being considered income or resources in determining eligibility for Supplemental Security Income (SSI) benefits.

However, the Act has experienced issues, as Congress failed to fully fund the promised $750 million mandated by the Act and advocates continued to urge Congress to
fund the act.

While HFA and other advocates continue to move the goals of the Ricky Ray Act forward, other impactful advocacy efforts are taking place today to help the community not only survive, but thrive now
and in future.