[Congressional Record Volume 140, Number 33 (Tuesday, March 22, 1994)]
[House]
[Page H]
From the Congressional Record Online through the Government Printing Office [www.gpo.gov]


[Congressional Record: March 22, 1994]
From the Congressional Record Online via GPO Access [wais.access.gpo.gov]

 
                         TEN THOUSAND WILL DIE

  The SPEAKER pro tempore. Under a previous order of the House, the 
gentleman from Florida [Mr. Goss] is recognized for 5 minutes.
  Mr. GOSS. Madam Speaker, when a teenager from Florida--Kimberly 
Bergalis--died as a result of the AIDS virus she contracted during a 
routine visit at her dentist's office, the Nation responded with horror 
and calls for action. The incident--which sparked massive media 
interest, new legislative proposals, and full-blown congressional 
hearings--sounded a warning alarm in the hearts and minds of every 
parent. Could this happen to my child? Well, Madam Speaker, the parents 
and loved ones of more than 10,000 hemophiliacs doomed to the same fate 
have a tragic answer to that question--it can and did happen--and many 
say it could still happen again in spite of everything we now know 
about AIDS and its transmission through the Nation's blood supply. Ten 
thousand people, half of all hemophiliacs in America today, face almost 
certain death from AIDS they contracted during the 1980's, when HIV-
tainted blood contaminated the blood clotting products hemophiliacs use 
to protect themselves from uncontrollable bleeding. It is a tragic 
irony that the very product--known as ``factor''--which the hemophilia 
community had viewed as a salvation, offering hope for healthy, active, 
and normal lives--ended up infecting them with a virus that eventually 
kills. Members of the hemophilia community describe themselves as the 
``canaries in the coal mine.'' They are, as they say, at the front end 
of the blood supply--and when something goes wrong with the blood 
supply, the first place you will see the results is within their 
community. In the early 1980's before proper screening for AIDS was 
available, 50 percent of hemophiliacs--some of whom can be exposed to 
blood products gleaned from as many as 100,000 donors of blood in a 
single year--were infected. In most cases, it was years before these 
victims discovered their plight, and as a result more than 10 percent 
of their wives and some yet-unborn babies were also unknowingly 
infected. Today, Americans are told that such a devastating lapse could 
not recur because technology and awareness has improved to the point 
that the blood supply is completely safe. Understandably, hemophiliac 
victims, their families, and those members of the community who have 
not been infected have a hard time trusting this fact. That is why I 
joined with Senators Graham from Florida and Kennedy from Massachusetts 
in requesting review by the Department of Health and Human Services--
not only of what went wrong in the 1980's, but also of the 
effectiveness of safeguards now in place for protecting our blood 
supply. Secretary Shalala commissioned a study by the National Academy 
of Sciences, and we await its expert conclusions, expected within the 
next year and a half. But what do we do in the meantime? How can we 
help those 10,000 people and their families? How can we ease their pain 
and address the incredible sense of betrayal and resentment they feel? 
I would like to share with my colleagues excerpts from just a few of 
the hundreds of letters I have received from anguished people across 
the country. Quote:

       I was the mother of a wonderful 15-year-old son, my only 
     child, who was affected by HIV disease through contaminated 
     blood products. If you could only realize and feel the pain 
     for just 1 day of having a beautiful, loving, intelligent son 
     taken away so needlessly only because of greed and lack of 
     caring it would break your heart.

  Another writes, quote:

       I am a 34-year-old hemophiliac who was married in 1986, 
     never realizing the danger I was to put my wife through. My 
     life since 1988 has been a living hell * * * I realize I am 
     waiting to die and all I ask is that it is not in vain.

  Another says quote:

       I have learned to accept my dealth and this manner of 
     living, but it still hurts when I think that this could all 
     have been avoided if proper controls had been in place 15 
     years ago.

  While it's clear that our understanding of AIDS and the blood supply 
was still new and evolving during the early 1980's, victims of 
contaminated factor and their families believe that more could and 
should have been done with the information that was available to 
protect them. What people in charge knew, when they knew it and what 
they did with that information is the subject of an ongoing class 
action lawsuit. In the meantime, and as the N.A.S. proceeds, we must 
continue to look for ways to help these innocent victims and their 
families to cope with their cruel fate.

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