[Congressional Record Volume 141, Number 148 (Thursday, September 21, 1995)]
[House]
[Page H9405]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




             HELPING VICTIMS OF HEMOPHILIA-ASSOCIATED AIDS

  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, for 6 years I and my staff have worked with 
victims of hemophilia-associated AIDS seeking justice and assistance 
from the Federal Government. Because hemophiliacs rely on blood-
clotting products made from human blood, they are at an enormous risk 
of contracting blood-borne diseases. In the 1980's, tragedy struck this 
community, and approximately 8,000 Americans--or one-half of all 
hemophiliacs in this country--became infected with the deadly virus 
that causes AIDS. This tragedy occurred in part because the Federal 
Government failed to fulfill its unique responsibility for regulating 
the safety of blood products and for taking aggressive action to 
prevent the spread, through blood products, of the HIV virus. That 
conclusion was strongly supported in a recent report of the Institute 
of Medicine, a highly respected, objective, scientific analysis arm of 
the National Academy of Sciences. This report has confirmed my belief 
that the Federal Government shares the responsibility for what 
happened, since the regulatory system failed to respond to the clear 
early warning signs of blood-borne AIDS. As a result, in my view the 
Federal Government has a clear and compelling obligation to provide 
compassionate assistance to the victims of what has been called the 
worst medical tragedy in modern history. I have introduced legislation, 
called the Ricky Ray Hemophilia Relief Fund Act, to establish a 
compensation program that would allow the Government to own up to its 
obligation. This bill is named for a 15-year-old Florida boy who died 
in December 1992, and whose family today still suffers from his loss 
and the ongoing illnesses of Ricky's two brothers, who are also HIV 
positive hemophiliacs. The Ricky Ray bill, which carries more than 125 
bipartisan cosponsors, establishes a trust fund from which eligible 
victims could each claim $125,000. The legislation specifies that the 
trust fund, once authorized, would sunset after 5 years and would be 
capped at a total of $1 billion, with the funds to come from the annual 
appropriation process. Some people have asked, what makes these victims 
special? What is it about this tragedy that moves us to provide 
Government compensation?

  What is unique about the victims of hemophilia-associated AIDS? In my 
view, the record is clear: Government has established a unique 
regulatory scheme for blood products, overseeing their safety under the 
auspices of both the Food, Drug, and Cosmetic Act and the Biologics 
Act. In making its regulatory decisions about the safety of blood 
products, the FDA, until just recently, relied heavily on advice from 
an advisory panel comprised in large part of people with expertise from 
the blood banking industry itself. In addition, we have a national 
blood policy, established in 1974, that outlines our commitment to 
blood and blood products as a national resource. And blood products are 
exempted from national product liability legislation, fostering the 
development of a unique legal framework in which blood products are 
shielded from normal product liability standards under nearly all State 
laws.
  Mr. Speaker, this is a brief outline of why I believe a strong case 
can be made that this situation--in which we have about one death every 
day of a hemophiliac with AIDS--is unique and requires a special 
Federal response. I understand that the Federal Government cannot 
become involved in every tragic case that occurs in this country. But 
this case is unique--and the Federal Government has a unique 
responsibility for what went wrong. I urge my colleagues to look at 
H.R. 1023--and I again ask that our Judiciary Committee schedule 
hearings to consider the complex regulatory, legal, and ethical 
questions this tragedy raises.
  Mr. Speaker, it is not going to go away. Every day one more person is 
going to die tragically, and it is partially our fault. We need to deal 
with it.

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