[Congressional Record Volume 144, Number 151 (Wednesday, October 21, 1998)]
[Senate]
[Pages S12912-S12915]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




              RICKY RAY HEMOPHILIA RELIEF FUND ACT OF 1998

  Mr. LOTT. Mr. President, I ask unanimous consent that the Senate 
proceed to the consideration of calendar No. 707, H.R. 1023.
  The PRESIDING OFFICER. Without objection, it is so ordered.
  The clerk will report.
  The legislative clerk read as follows:

       A bill (H.R. 1023) to provide for compassionate payments 
     with regard to individuals with blood-clotting disorders, 
     such as hemophilia, who contracted human immunodeficiency 
     virus due to contaminated blood products, and for other 
     purposes.

  The PRESIDING OFFICER. Is there objection to the immediate 
consideration of the bill?
  There being no objection, the Senate proceeded to consider the bill.
  Mr. DeWINE. Mr. President, H.R. 1023, the Ricky Ray Hemophilia Relief 
Fund Act, would authorize the establishment of a fund from which 
compassionate payments would be made to people with hemophilia who 
contracted HIV/AIDS through tainted blood products during the early 
1980s. These people were victimized by the failure of the federal 
government to safeguard these blood products--failures included 
inadequate measures to screen out high-risk donors and long-delayed 
recalls of blood products known to pose an elevated risk of infection. 
During the time period specified in the legislation, approximately 
7,200 victims were infected. Each victim--or the victim's family--would 
receive a single $100,000 payment. The total authorization is $750,000, 
which would have to be separately appropriated. The relief fund sunsets 
after 5 years. H.R. 1023 passed the House without objection on the 
suspension calendar in May. Similar legislation in the Senate (S. 358), 
which I sponsored, has 62 bipartisan cosponsors.
  Mr. JEFFORDS. I rise to make remarks concerning the Ricky Ray 
Hemophilia Relief Fund Act to provide compassionate payments to 
hemophiliac victims of the blood supply crisis of the 1980s. The House 
passed the bill last May; unfortunately the Senate may not be able to 
pass a bill this year. The tragedy of the blood supply's infection has 
brought unbearable pain to families all over the country. I have heard 
from hundreds of these individuals and families over the past months, 
and I had hoped this bill would bring some closure to the grief of 
thousands of families who have suffered because of the blood crisis of 
the 1980s.
  I am saddened, however, that the bill that passed the House 
acknowledged fewer than half the victims of the blood supply crisis. 
Along with Senators Warner and Faircloth, I have fought to include 
victims of transfusion-associated AIDS in the bill this year. They are 
victims of the same blood supply crisis and are just as deserving of 
acknowledgment and compassion from the federal government.
  I cannot overstate my disappointment, and I can only imagine their 
pain. This is a group of people that has suffered a great tragedy. In 
their minds, in the minds of the hemophiliac community, and in the 
minds of members who have advocated for the Ricky Ray bill, the federal 
government played a role in the tragedy. It would be bad enough for the 
federal government to never step forward and acknowledge the tragedy, 
but passing a bill without them would have been the worst kind of 
affront. We would have acknowledged the tragedy, but ignored the 
distress it has brought to this particular community.
  With commitment from a few of my key colleagues that we would pass a 
bill for transfusion-associated AIDS cases next year, I supported 
passage of H.R. 1023. I want to take this opportunity to discuss some 
of the background of the bill and the reasons that I have fought so 
hard to include the transfusion-associated AIDS community in the Ricky 
Ray bill this year.
  While financial need and simple compassion for the tragedy suffered 
may be two reasons of many to pass this bill, these reasons alone 
cannot justify government payments to victims of the blood supply. The 
bill is heavily rooted in the belief that in the early to mid-1980s the 
government failed to protect users of the blood supply. The record that 
has been built in the Senate in floor speeches and in testimony 
provided at the Labor Committee hearing reflects this reason above all 
others for passing this bill.
  Last October the Senate Committee on Labor and Human Resources held a 
hearing on ``HIV/AIDS: Recent Developments and Future Opportunities.'' 
A good portion of that hearing was devoted to a discussion on the blood 
crisis of the 1980s, resulting in the HIV infection of thousands of 
Americans who trusted that the blood or blood products with which they 
were treated was safe. Witnesses at the hearing included John Williams, 
the father of a child who contracted HIV from the clotting factor and 
died at the age of 18, and

[[Page S12913]]

Donna McCullough, a young woman who contracted HIV when she received a 
blood transfusion after a miscarriage.
  Several witnesses at the hearing, including my colleagues Senator 
Mike DeWine and Congressman Porter Goss, testified that the federal 
government played a role in bringing on this tragedy and therefore owes 
this expression of compassion to the community affected.
  Witnesses testified that the federal government is the watchdog 
charged with protecting the blood supply and that the government failed 
to respond aggressively to the early signs of blood borne diseases. The 
government did not do all it could have done to screen donors and test 
blood. The government failed to recall potentially contaminated blood 
and blood products; and then, knowing that transfusion of HIV-infected 
blood and blood products led to HIV infection, knowing that some of the 
blood was contaminated, and knowing that people were using it, the 
government still failed to notify people who were at risk. The details 
of the government's role were outlined in an Institute of Medicine 
(IOM) report published in 1995.


                    the institute of medicine report

  The IOM was commissioned to assess what happened in the 1980s with 
the hope of avoiding another crisis like the one that has devastated 
these families. The resulting report, ``HIV and the Blood Supply: An 
Analysis of Crisis Decisionmaking'' made criticisms of the government's 
handling of the blood crisis and has been cited many times in support 
of the Ricky Ray bill. Witnesses at the hearing spoke about the report 
and its findings, and it has been quoted repeatedly by advocates for 
the Ricky Ray bill.
  The report is usually quoted in a way that highlights the 
shortcomings of government decision-making as they affected the 
hemophiliac community. But there is more to the report, and I would 
like to outline some of the points that are made most often with regard 
to the IOM report--both because I think the findings of the report 
provide insight as to why the Ricky Ray bill has enjoyed the support it 
has, and also to demonstrate that the IOM findings applied equally to 
the transfusion community.
  The IOM Committee found a ``failure of leadership'' with regard to 
the government's role in ensuring the safety of the blood supply. We 
know that ``failure of leadership'' led to the HIV infection of more 
than one-half of the Nation's hemophilia population. In fact, the IOM 
Committee identified problems that:

     indicated a failure of leadership and inadequate 
     institutional decision making processes in 1983 and 1984. No 
     person or agency was able to coordinate all of the 
     organizations sharing the public health responsibility for 
     achieving a safe blood supply.

  The suggestion that only the hemophiliac community was affected by a 
``failure of leadership'' is an inaccurate representation of the 
report's findings. More importantly, that representation tragically 
excludes transfusion-associated AIDS cases, a community that is equally 
deserving of acknowledgment. Any failings of the government with regard 
to ensuring a safe blood supply clearly affected transfusion recipients 
as well as hemophiliacs.
  The IOM Committee also concluded that:

     when confronted with a range of options for using donor 
     screening and deferral to reduce the probability of spreading 
     HIV through the blood supply, blood bank officials and 
     federal authorities consistently chose the least aggressive 
     option that was justifiable.

  The government's decision to use least aggressive options with regard 
to donor screening and deferral decisions not only bypassed an 
opportunity to slow the spread of HIV within the hemophilia community, 
it resulted in thousands of cases of transfusion-associated AIDS. If 
infected blood had not been donated, no one would have been infected.
  The IOM report outlined several specific areas where it found that 
the government failed to provide leadership, including:
  March, 1983 letters relating to donor screening were unclear and not 
specific in their directives.
  A July, 1983 decision not to recall plasma products automatically 
whenever linked to individual donors identified as having or suspected 
of having AIDS.
  Delay in FDA's formal decision to recommend tracing recipients of 
transfusions from a donor who was later found to have HIV.
  Each of these failures has been described on this floor with regard 
to how it affected the hemophiliac community, leaving the strong 
impression that only the hemophiliac community was affected. Again, 
with full understanding of the facts, it is obvious that each of these 
decision points affects not only a hemophiliac in receipt of an 
infected blood product, but any recipient of an infected blood 
transfusion, whether hemophiliac, surgical patient, or a mother who had 
just lost her first child to a miscarriage.
  The IOM used the phrase ``missed opportunities'' to characterize the 
government's activities during the early and mid-1980s. Advocates for 
the Ricky Ray bill have made much of how the ``missed opportunities'' 
affected the hemophiliac community. The IOM said:

       The Committee believes that it was reasonable to require 
     blood banks to implement these two screening procedures 
     [screening donors and testing blood for surrogate markers] in 
     January 1983. The FDA's failure to require this is evidence 
     that the agency did not adequately use its regulatory 
     authority and therefore missed opportunities to protect the 
     public health.

  Seen in context, the ``missed opportunities'' argument, like the 
``failure of leadership'' argument, applies equally to the transfusion-
associated AIDS cases.


                             Legal Barriers

  Mr. Williams and others at the hearing last October testified that 
the hemophiliac community has found it nearly impossible to make 
recovery through the courts because of blood shield laws in most states 
that raise the burden of proof for product liability claims for blood 
and blood products. In addition, all states have statutes of 
limitations that prohibit litigation if the suit was not filed within a 
certain period of time. These arguments also have been presented on the 
Senate floor in support of the Ricky Ray bill and the hemophiliac 
community.
  Again, these legal barriers also apply to the transfusion cases. 
Transfusion-associated AIDS victims are subject to the same blood 
shield laws and statutes of limitations that Mr. Williams mentioned at 
the Labor Committee hearing last fall. I heard from one father in 
Virginia who described the humility of being laughed at as the winning 
defense attorneys left the courtroom. He and his wife had filed suit 
after their three-year old son died of AIDS. The boy had been infected 
by a transfusion he received as an infant. Is he any less deserving?
  Furthermore, we must note that the hemophiliac community has settled 
a class action with the factor manufacturers for $100,000 per infected 
individual. The transfusion community has won no such class action 
award. Some people may think that most transfusion victims recovered 
millions of dollars in court, and therefore need not be helped in this 
legislation. That is simply not the case. While in a very few cases 
individuals in this group were able to track the source of their 
infection and bring suit successfully against the blood bank, the vast 
majority were not.
  According to the book ``Transfusion-Associated AIDS,'' by Robert K. 
Jenner, an attorney who has represented both hemophiliac and 
transfusion victims, only 2-6% of transfusion victims have received any 
compensation through legal action. He cites a study conducted by 
Transfusion magazine, and notes that only 150-300 transfusion lawsuits 
were filed. Of those, only 40 went to trial, and only 14 resulted in 
awards. Many of the 14 awards were later reduced by the court or 
settled after trial for a lesser amount.

  Combining these numbers with CDC's estimate that there are 10,214 
victims of transfusion-associated AIDS from the early and mid-1980s, we 
can calculate that somewhere between 1.5 to 3% of transfusion cases 
filed suit, and far less than 1% of those experienced recovery anywhere 
near the hundreds of thousands we have been led to believe they 
received in court.


                    Compensation in Other Countries

  We have been reminded frequently that the U.S. is the last developed 
country to provide assistance/compensation to hemophiliacs who were 
infected with HIV by contaminated

[[Page S12914]]

blood. What we haven't heard is that many of those countries included 
other victims of the blood supply crisis in their compensation 
programs, including Australia, Canada, Denmark, France, Italy, and 
Switzerland.


                     Estimating Transfusion Victims

  I know some of my colleagues may be concerned that we don't know 
enough about the transfusion victim community to have confidence in the 
number of victims we have calculated. I believe we know quite a bit. 
The estimated number of transfusion victims, 10,214, is based on data 
obtained from the Centers for Disease Control, the federal agency 
charged with tracking incidence of AIDS. Further, the Congressional 
Budget Office has analyzed this number and concurs with the estimate.
  While we cannot identify these victims by name, I don't see how we 
could and I don't see why we need to. The legislation that was reported 
unanimously by the Committee on Labor and Human Resources, S. 2564, 
establishes appropriate criteria that must be demonstrated in order to 
collect a compassionate payment.
  We know that the transfusion victims acquired AIDS through the same 
mode of transmission as the hemophiliac community and they have 
suffered greatly. Like the hemophiliac community, some of them passed 
the disease on to their spouses and children and must live with that 
pain. Like the hemophilia community, some of them have experienced 
extreme financial difficulty because of the combined effect of their 
underlying disease and AIDS.
  Regardless of our ability to generalize about this group of people, 
we know that they have suffered greatly because of the blood supply 
crisis, and we owe them the same acknowledgment and compassion that we 
have offered to the hemophilia community.


                          No Washington Lobby

  There are roughly 10,000 people in addition to hemophiliacs who 
suffered extreme tragedy because of the blood supply crisis of the 
1980s. The transfusion community is in fact somewhat bigger than the 
hemophiliac community. That fact may surprise my colleagues, because 
most of them have probably not been lobbied by this community.
  Upon reflection it will become clear why this community has not been 
actively lobbying. They have no political voice and no Washington 
office providing them with daily updates on the status of their bill. 
They don't have a lobbying voice in Washington or a strong grassroots 
network because they are not united by a single disease like 
hemophilia.
  There is one courageous individual working on behalf of this group 
who deserves mention. Steve Grissom is the President of a group called 
National Association for Victims of Transfusion-Acquired AIDS, or 
NAVTA. Steve is in his mid-40s and suffers from AIDS acquired from 
blood transfusions he received to treat his leukemia. Steve is a 
strong, proud man who certainly does not want our pity. I want to 
express my deep respect for the man Steve is and the work he has done 
to help the cause of thousands who suffer as he does.
  I met with Steve last summer in my office here in Washington. He 
drove from North Carolina with his wife and young daughter. Steve moves 
in a wheelchair and breathes with the assistance of an oxygen tank. I'm 
not sure whether he chose to drive rather than fly all the way to 
Washington because it's easier on his breathing or because of financial 
constraints, and I'm not going to ask. Either way, making that long 
drive is symbolic of his commitment.
  Steve works by himself out of his home with the assistance of e-mail, 
fax machines, and the internet. He has done everything he can think of 
and can afford to do to connect with other people who share his 
circumstances. It is more difficult than any of us can imagine to try 
organize the population that Steve is trying to reach. Except for HIV 
or AIDS, these people have nothing in common. And the one thing they do 
have in common--AIDS--carries enormous stigma. Privacy considerations 
make it nearly impossible for this community to network and form an 
effective grassroots lobby. How should these people go about finding 
each other?
  They also have no money. They have no substantial membership to 
support campaigns to alert other victims to their existence. They have 
no pharmaceutical or corporate partners who want to collaborate with 
them to advance a research or policy agenda related to their disease, 
or want to make contributions to the work of NAVTA in the name of good 
public relations.
  In addition to paying tribute to Steve and NAVTA for the enormous 
work he has done to support my efforts in the Senate, I also want to 
draw attention to the generous spirit of NAVTA. Transfusion-associated 
AIDS victims know they should have been included in the Ricky Ray bill. 
Even so, in their contacts with me they have always been clear that 
they did not want to be added to the bill if that would preclude 
passage. Theirs is a generosity of spirit seldom seen in Washington.
  As it happened, NAVTA copied the National Hemophilia Foundation on 
its June letter expressing NAVTA's wish that transfusion cases not be 
the reason the bill dies. Within a week the letter was being circulated 
on Capitol Hill as an argument for excluding transfusion victims.


                          Timing and Procedure

  The House passed its version of the Ricky Ray bill in May, 1998. At 
the time of the Committee's hearing on this issue (October, 1997) I had 
asserted my view that the bill should extend its compassion to other 
victims, and immediately upon House passage I began work on that 
effort.
  The immediate message from the advocates of the bill was that there 
was not time to make these changes. I did not believe that then and I 
don't believe it now. The changes I proposed were simple in nature and 
I never heard a good reason that they couldn't be made.
  In June, I circulated draft language that would include the 
transfusion community. Early in July full-page advertisements ran in 
the Vermont Sunday papers asserting that I was holding up the bill in 
my Committee. This while I was still waiting for feedback on my 
language from the same group that ran the ads.
  Nonetheless, I continued to press forward and eventually received 
feedback from all interested parties. There were no substantive 
comments to the changes I proposed. In fact, advocates for the bill 
agreed that transfusion victims had suffered a tragedy similar to their 
own. The objection I continued to hear was that there wasn't time in 
the legislative session to complete the process.
  Once I had received feedback from all interested parties, I 
informally queried my Committee members about discharging the bill from 
the Committee--this was in July just before the August recess. I was 
told there would be objections; significantly, those objections were 
unrelated to the changes I had made to the bill. It became apparent 
that a mark-up would be required, so at the end of July my proposed 
language was published in the Congressional Record.
  I scheduled a Committee markup of the Ricky Ray bill for September 9. 
Because there was not a quorum present we were unable to conduct 
Committee business that day. I attempted to complete the markup two 
more times in the following week, but both times scheduling changes on 
the floor precluded our meeting. Early in the week of September 14, 
Senator DeWine and I agreed that the prudent next step would be to 
allow both my Chairman's mark and H.R. 1023 to be passed from the 
Committee.
  We rescheduled the markup for September 16, and on that day both 
bills passed the Committee by voice vote. I promised then that I would 
do everything I could to pass a bill that included both communities. I 
also promised that if it became clear that we couldn't get the changes 
passed this year, I would agree to passage of the Ricky Ray bill 
without the transfusion community. That is where we now find ourselves, 
so, with assurances that we will add transfusion victims next year, I 
support passing H.R. 1023.
  In closing, I would like to remind my colleagues who the transfusion 
victims are. They are pregnant Moms, accident victims, and people like 
Steve Grissom, mentioned earlier. Until now they were united only in 
their trust in a blood supply that gave them AIDS. I hope that, if 
nothing else, our efforts this year in the Senate will help other 
transfusion victims to find Steve and

[[Page S12915]]

NAVTA so that, next year, my colleagues will hear from the other 
victims of the blood supply crisis.
  They are out there and they, too, deserve our acknowledgment and 
compassion.
  Mr. LOTT. Mr. President, I congratulate Senator DeWine and commend 
him for his dedicated effort in this area. He felt that a wrong had 
been committed and that people had suffered because of no mistake of 
their own. Something had to be done to right the wrong. This is the 
bill that has been known as the Ricky Ray Relief Fund.
  Mr. President, I ask unanimous consent that the bill be read the 
third time and passed, the motion to reconsider be laid upon the table, 
and that any statements relating to the bill appear at this point in 
the Record.
  The PRESIDING OFFICER. Without objection, it is so ordered.
  The bill (H.R. 1023) was considered read the third time, and passed.

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