[Congressional Record Volume 142, Number 48 (Tuesday, April 16, 1996)]
[House]
[Pages H3437-H3438]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]
THE RICKY RAY HEMOPHILIA RELIEF FUND ACT
The SPEAKER pro tempore. Under a previous order of the House, the
gentleman from Florida [Mr. Goss] is recognized for 5 minutes.
Mr. GOSS. Mr. Speaker, a majority of the House now agrees that we
should provide compassionate assistance to the 8,000 victims of
hemophilia-associated aids. The Ricky Ray Hemophilia Relief Fund Act--
which establishes a compensation program for the victims of this
tragedy--now carries 219 bi-partisan cosponsors. I introduced the Ricky
Ray Bill--which is named for a constituent who was 15 when he died of
hemophilia-associated Aids in 1992. We started with two dozen sponsors.
But each week for the past year the support for this measure has
grown thanks to the awesome grassroots participation of the victims of
hemophilia-
[[Page H3438]]
associated Aids, their families and their friends. These folks have put
aside their differences, rallied together and learned to use the
legislative process to further their goals. I am extremely proud of
their work and pledge to redouble my efforts to make sure this bill
gets heard during this Congress.
Hemophilia is an inherited blood-clotting disorder causing serious
internal bleeding episodes that, if left untreated, can lead to
disfigurement and even death. To help control and prevent such
bleeding, hemophiliacs rely on blood-products, which are manufactured
and sold by pharmaceutical companies. Because these products are made
from the pooled blood of thousands of people, the potential for
infection with blood-borne disease among those who use them is very
high, something that has been well-known for decades. In fact, since
the 1970's, the hemophilia community has grappled with the serious
consequences of hepatitis, a debilitating chronic illness. But in the
early 1980's, a much more deadly villain struck, as nearly one-half of
all people with hemophilia in the United States became infected with
the virus that causes aids. Today they are dying at a rate of about one
each day.
Mr. Speaker, we have long argued that the Federal Government shares
responsibility for this devastating situation, because it failed to
respond to the early warning signs that Aids was transmissible by blood
and blood products. During the early years of Aids, repeated
opportunities to reduce the likelihood of contaminated blood entering
the supply of blood products were missed.
This conclusion was supported by a 2-year study, conducted by a
distinguished panel at the institute of medicine. In a report entitled
``HIV and the blood supply,'' the IOM panel concluded that the Federal
agencies missed opportunities to protect the public health because they
consistently chose the least aggressive response to the early warning
signs. The report concluded that the system--which was charged with
protecting the blood supply, ensuring the safety of manufactured blood
products, and informing the public of risks--failed to deal with the
relatively well-known problem of hepatitis and was therefore unprepared
to confront the crisis of Aids. Mr. Speaker, the premise behind the
Ricky Ray bill is that the Government has a unique responsibility for
regulating the safety of blood products, based on a Federal blood
policy and several major statutes that establish the regulatory
framework for blood.
Members should also understand that the legal system classifies blood
products in a unique way. Even though they are commercially marketed
and sold, blood products enjoy special status under the so-called
``blood shield'' laws of every State, which protect against product
liability lawsuits.
Given these facts, we have concluded that Government has a unique
obligation to assist the victims and so the Ricky Ray bill authorizes
the creation of a trust fund, administered by the Attorney General, to
provide $125,000 in assistance to each victim who meets strict
eligibility criteria.
The trust fund would sunset after 5 years, would be capped at $1
billion and would be subject to funding through annual appropriations.
Mr. Speaker, the United States has yet to set up an assistance
program, even though more than 20 other nations have done so. Just last
month the Government of Japan and five drug companies--including
several American firms--agreed to provide the equivalent of $430,000 to
each of the estimated 1,800 victims in Japan, with the government
paying 44 percent and the companies paying 56 percent.
It is time the United States took its share of responsibility for
what happened to 8,000 American hemophiliacs during the 1980's. Please
join the majority of bipartisan support of the Ricky Ray Hemophilia
Relief Fund Act.
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