Fall 1997 Volume 3.1
Hemophilia Federation Launches First Annual Symposium
The weekend of September 5 – 7, 1997 was filled with entertainment, education, and an epicurean world tour for members of our community who gathered for the Federation’s first annual educational symposium at the Hyatt Regency Hotel in downtown Houston, Texas. From registration on Friday afternoon through Neil Willenson’s motivational presentation at the concluding luncheon on Sunday, the pace was brisk but enjoyable.
On Friday evening there was the debut of the Federation Follies. Ed Burke served as emcee and kept the audience in laughter with his easy patter of jokes and entertaining tales. Community
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Congressman Shays Convenes Hearing on Pool Size
On Thursday, July 31, 1997, Congressman Christopher Shays of Connecticut, Chairman of the Human Resources Subcommittee convened an oversight hearing on the safety implications of plasma pool sizes in the manufacture of fractionated blood products. The hearing was announced by Congressman Dan Burton of Indiana, Chair of the House Government Reform and
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Cry Bloody Murder
Elaine DePrince lost two sons in 1993 and 1994 – just nine months apart. She is the mother of three surviving children and resides in Cherry Hill, New Jersey.
Elaine’s book “Cry Bloody Murder”, is the result of a promise made to her dying son. Cubby and is a scathing indictment of the blood-products industry. Random House, publisher of this all too familiar story calls it a poignant and shocking story of a mother whose hemophiliac sons contracted AIDS through blood transfusions. Robert Massie, author of “Nicholas and Alexandria” and “Journey”, calls “Cry Bloody Murder,” ia[sic] j’accuse of historic proportions, one that could have an
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volume 2, number 1
Introduction Set For Late February!
THE RICKY RAY HEMOPHILIA RELIEF FUND ACT OF 1995
This month marks a new beginning for our community… the Ricky Ray Hemophilia Relief Fund Act of 1995 is being introduced. This is a victory for us all and is happening because of the efforts of individuals and families across this country. Many of you have spent this past year visiting your representatives, calling their offices, and traveling to Washington to tell your stories. It is your stories, your lives, that have made this day possible. This issue of the Congressional Update contains specific language of the Ricky Ray Hemophilia Relief Fund Act of 1995 and an update on our efforts to obtain Medicare and Social Security benefits.
We need your help now more than ever. This is the time, with the opening of the new year, to visit those friends you have made in the Congress and Senate and to introduce yourself to new members.
THE RICKY RAY HEMOPHILIA RELIEF FUND ACT OF 1995
The Ricky Ray Act seeks to address the worst medically caused disaster in history… a disaster that has devastated our lives and our families. The passage of this bill will mean new hope for the future for our community and will identify government responsibilities for the past.
Once passed individuals with hemophilia who were infected with HIV through using factor products, their infected spouses and children, and their surviving family members, will need to provide the federal government with proof of HIV infection and their use of factor between 1980 and 1987. The bill will provide all eligible individuals and families with $125 thousand dollars that cannot be taxed. (for more details refer to the bill on pages 2-4.)
This Relief Fund Act has been named in honor of Ricky Ray, a 15 year old young man with hemophilia and HIV, who died on December 13, 1992. Ricky was infected with the AIDS virus through the use of blood products. As thousands of us with bleeding disorders, Ricky lived with hemophilia and HIV and he and his family brought national attention to the epidemic in our community. We honor Ricky for his fight for his life, and his parents for their partnership in creating this Relief Fund bearing his name.
When passed, the Ricky Ray Hemophilia Relief Fund Act of 1995 will state in the national record that:
- The Federal Government has a shared responsibility with the blood-products industry for protecting the safety of the blood supply of the Nation and for regulating the safety of blood-clotting agents;
- During the period beginning in 1980 and ending in 1987, despite growing concerns about blood-borne viruses such as Government did not require the blood-products industry to provide directly to individuals with blood-clotting disorders, such as hemophilia, all available information about the risks of contaminated blood products;
- The Federal Government did not require that, to allow for fully informed decision making regarding treatment options, the blood-products industry provide directly to individuals with blood clotting disorders, such as hemophilia, all available information about the risks of contaminated blood products;
- The Federal Government failed to fulfill its responsibility to properly regulate the blood products industry, and thus exposed individuals with blood clotting disorders, such as hemophilia, and their families to potential infection with a fatal disease.
The Ricky Ray Hemophilia Relief Fund Act has been a joint effort of the Community Advocacy Working Group (including representatives of NHF, COTT, Peer, the Hemophilia Federation and the Ray Family) and the hard work and involvement of thousands of members of our community. The introduction of this Relief Act shows the deep concern of those in government who champion our cause. These outstanding national leaders have been educated to understand the outrages that we have faced as a community.
A TRAGEDY HAPPENED IN YOUR OWN BACKYARD…
Bridget lost her father when she was only 10 years old to hemophilia related HIV/AIDS infection. He unknowingly acquired the HIV Virus through the use of FDA approved tainted blood factor products used to treat hemophilia.
Today, Bridget worries about her 2 year old hemophiliac son who much also take blood factor products.
There are families like Bridget’s in your state.
Bridget and her son stand over a picture of her father during the April 1997 Photographic Display in Washington DC. Her father died at the age of 33 from complications of hemophilia related HIV/AIDS, which he contracted from FDA, approved medication.
Please Support Blood Safety and Please Support the Ricky Ray Hemophilia Relief Fund Act. (H.R. 1023 / S. 358)
For more information, call Hemophilia Federation at (800) 230-9797, Committee of Ten Thousand (COTT) at (800) 488-2688 or National Hemophilia Foundation at (800) 463-6643