[Congressional Record Volume 142, Number 29 (Wednesday, March 6, 1996)]
[Extensions of Remarks]
[Pages E289-E290]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




   THE RICKY RAY HEMOPHILIA RELIEF FUND ACT: HELPING THE VICTIMS OF 
                       HEMOPHILIA-ASSOCIATED AIDS

                                 ______


                          HON. GERRY E. STUDDS

                            of massachusetts

                    in the house of representatives

                        Wednesday, March 6, 1996

  Mr. STUDDS. Mr. Speaker, I would ask each of my colleagues to imagine 
that you are the parent of three fine sons, each of whom has inherited 
the gene for hemophilia. Then imagine, if you can, that each of your 
sons acquires the AIDS virus through a contaminated blood transfusion. 
Your first son dies at age 40; the second, at 37, and your surviving 
son is very sick. Among them, they have nine children--your 
grandchildren--all of whom will be left fatherless.
  At least one family in my congressional district does not have to 
imagine what that would be like. They know, because it is precisely 
what has happened to them. The heartbreaking story of the family of 
Joseph and Jacqueline Savoie is movingly told in an article by Liz 
Kowalczyk of the Patriot Ledger, published January 6-7, 1996, which I 
ask to have inserted in the Record.
  Nor is their story unique. I have received letters from people 
throughout New England who have lost family members to hemophilia-
associated AIDS. At least 8,000 people with hemophilia and other blood-
clotting disorders contracted HIV/AIDS from transfusions of 
contaminated antihemophilic factor [AHF] between 1980 and 1987. This 
means that as many as half of all individuals who suffer from blood-
clotting disorders were exposed to HIV through the use of AHF.
  Every death from AIDS is a tragedy that touches many lives. Yet who 
can fathom the sheer devastation inflicted on families such as these? 
The enormity of their experience becomes still more compelling when one 
learns that the Government could have acted to prevent it.
  In 1980, when the first gay men began falling ill from the mysterious 
ailment that would ultimately be called AIDS, the technology became 
available to pasteurize blood-clotting agents. Yet for 7 years the 
Reagan administration failed to require the blood products industry to 
make use of this technology. Nor did the Government require the 
industry to inform the public about the risks of contamination with 
blood-borne pathogens such as HIV.
  The failures of our public health system that contributed to this 
catastrophe are documented in a report by the Institute of Medicine of 
the National Academy of Sciences, commissioned by Secretary Shalala and 
published last year. The report recommends a series of steps that will 
help ensure the safety of the blood supply so that future tragedies can 
be prevented.
  Such forward-looking measures are essential. But we also have a 
responsibility as a society to make restitution to those for whom these 
steps have come too late. That is why I have joined with Congressmen 
Porter Goss of Florida in introducing bipartisan legislation to provide 
partial compensation to these individuals and their families. The bill, 
H.R. 1023, is known as the Ricky Ray Hemophilia Relief Fund Act. It is 
named for a young man from Florida with hemophilia-associated AIDS, who 
died in 1992, at the age of 15.
  The bill would establish a Federal trust fund to provide $125,000 in 
compensation to victims or their survivors. This may seem like a 
substantial amount of money in these budget-cutting days. In fact, it 
will not even cover the annual medical costs incurred by many of these 
families. As Steve Savoie wrote to me last year, ``I have been stripped 
of my dignity and can no longer support my family. * * * The financial 
stress is a big part of our lives. * * * There are days I can just 
barely make it through the day, only to get bill collectors calling the 
house looking for payment.''
  The compensation this legislation would provide cannot undo the 
terrible harm that has been done to Ricky Ray, Joe, Phil, and Steve 
Savoie, and the thousands like them. But it is the very least we can 
and must do. I commend Congressman Goss for introducing this bill, and 
urge my colleagues to join us and our 181 current cosponsors in 
supporting it.

               [From the Patriot Ledger, Jan. 6-7, 1996]

                  Anger, Tears Reveal Family's Tragedy

                           (By Liz Kowalczyk)

       For the past five years, Joseph and Jacqueline Savoie have 
     watched life slip away from their three youngest sons. But 
     they couldn't bring themselves to tell people why.
       When the boys were born with hemophilia in the 1950s, the 
     Savoies thought that was the worst they would have to face.
       Each time Joseph Jr., Steven and Philip hurt themselves 
     playing baseball or climbing a tree, they were guaranteed a 
     series of transfusions and weeks in the hospital.
       So when drug companies started selling a blood-clotting 
     solution that their sons could inject at home, the Savoies 
     were thankful.
       Then their gratitude turned to outrage.
       The same product that granted Joe, Steve and Phil such 
     freedom became a death sentence.
       Sometime during the early to mid-1980's each of the three 
     brothers contracted the AIDS virus from contaminated blood 
     used in the clotting solution.
       Joe was the first to die of AIDS-related lung cancer in 
     January 1992. He was 40.
       Phil, the baby of the family, died June 6 of AIDS-related 
     illnesses, including pneumonia. He was one week short of his 
     38th birthday.
       Steve, 41, is the sole survivor.
       ``I'm really scared,'' he said. ``Since Thanksgiving, I've 
     had problems with my throat. I'm afraid it's the beginning of 
     things.''
       His weight has dropped from 200 to 176 pounds, and his 
     tonsils have become so swollen in the last few days he just 
     eats Cream of Wheat.
       Steve's mother lies awake at night and prays.
       ``We prayed for a miracle, we prayed for drugs, we prayed 
     to every saint, and finally you give up,'' she said. ``You 
     feel like you're sitting on railroad tracks and you know 
     the train is coming but there is nothing you can do to 
     stop it.''
       Kathy Savoie, Steve's wife, interjected: ``We're still 
     praying.''
       The Savoies told no one but a few close friends and their 
     extended family what was killing their sons. Not their 
     coworkers and not their neighbors in Weymouth and Abington. 
     They worried that people in their suburban communities would 
     ostracize them or ask too many painful questions.
       But Steve convinced his family that talking about their 
     very personal tragedy will help ease their frustration.
       Steve and Kathy live in Weymouth with their two teenagers, 
     Steven Jr., 14, and Kelly, 17. Kathy and the children have 
     tested negative for HIV, the virus that causes AIDS.
       He decided to tell his story after the Supreme Court 
     declined in October to consider a class-action lawsuit, which 
     was brought by AIDS-infected hemophiliacs against four drug 
     companies and the National Hemophilia Foundation.
       He and the rest of the family are also frustrated that 
     legislation giving $125,000 to anyone with hemophilia-related 
     AIDS, or to their survivors, has been stalled in Congress for 
     months. Supporters say the money would compensate victims for 
     the Food and Drug Administration's failure to pull the 
     contaminated products off the market sooner.
       ``It makes me so awful damn mad to think we lost two boys 
     and they sit back and act like it's nothing,'' said Joseph 
     Savoie, a retired Weymouth firefighter who now lives in 
     Abington with his wife.
       The Centers for Disease Control estimates that 10,000 
     hemophiliacs--half of all those in the United States--
     contracted the AIDS virus before the mid-1980s. That's when 
     drug companies started heat-treating the blood products used 
     in the clotting solution, a procedure that usually kills the 
     virus.
       About 2,000 hemophiliacs nation-wide have died of AIDS. In 
     Massachusetts, 358 people are known to have contracted HIV 
     from blood products. Two-thirds of those people have died. 
     Activists estimate that in the suburbs south of Boston about 
     two dozen families have children who are infected.
       The numbers haunt Steve Savoie.
       ``The last time I was in the hospital, I was looking out 
     the window,'' he said. ``I imagined I saw Joe's and Phil's 
     faces. They were

[[Page E290]]

     asking me to do something. I'm the only one left.''


                          ``We were hellions''

       During the 1950s and 1960s, when Joe, Steve and Phil were 
     children, hemophiliacs had to go to the hospital for blood-
     clotting transfusions.
       Hemophiliacs--who are almost always boys who inherit the 
     condition from their mothers--lack clotting proteins in their 
     blood. Some needed weekly transfusions. Less severe 
     hemophiliacs, like the Savoie brothers, have some clotting 
     power in their blood, and need transfusions only when they 
     get hurt.
       ``The doctors said not to climb trees, but we did. They 
     said not to ice skate, but we did,'' he said. ``We were 
     hellions.''
       Steve ended up in the hospital every couple of months for 
     the little accidents that almost every kid stumbles into. 
     Once, he absentmindedly stuck his tongue to an iced-over 
     porch railing and pulled off the skin. Another time, he 
     tripped over some bricks in a yard while delivering 
     newspapers. The sprained ankle caused internal bleeding.
       So in 1968, when the FDA approved the first clotting powder 
     that hemophiliacs could mix with sterile water and inject at 
     home, it seemed like a gift.
       But there was a problem. By the late 1970s, the clotting 
     medicine was manufactured from the blood of tens of thousands 
     of donors, many of them intravenous drug users who were paid 
     for their blood.
       The collection centers did not screen them for HIV, and 
     just one infected donor could contaminate the entire pool of 
     blood.
       Steve said he had no idea how big a risk he was taking each 
     time he injected the solution until one night in 1985 or 1986 
     when he turned on the national news.
       He was shocked by what he heard: There was evidence that 
     the blood products were contaminated with the AIDS virus, and 
     hemophiliacs should order heat-treated blood products. Steve 
     said he immediately called his brothers to warn them.
       The next morning, Kathy Savoie called the New England 
     Hemophilia Center at Worcester Memorial Hospital, from which 
     the Savoies ordered their clotting medicine.
       ``They said we could not get a new supply until ours was 
     gone,'' she said. ``I hung up, we took everything out of the 
     refrigerator and put it all in a big garbage bag. I called 
     them back and said `We're out of it, so send us the heat-
     treated stuff.' ''
       But it was too late.
       Jacqueline Savoie said tests later showed that Joe, an 
     electrician, was infected sometime in the spring of 1984. 
     She's not sure when Phil, a carpenter, contracted the virus.
       Steve was so afraid that he waited six months to get tested 
     for HIV, and then he waited another six months to call for 
     the results.
       Steve said he doesn't know exactly when he was infected. 
     AIDS first started appearing in the United States in 1981, 
     and the drug companies did not start exclusively selling 
     heat-treated blood products until 1985. His infection was 
     probably sometime in between.
       During that period, Steve worked as a carpenter, and as is 
     often the case in his line of work, he was injured several 
     times. He could have contracted the virus in July 1984, the 
     month that he replaced the roof on his house. When the wooden 
     planks he was standing on collapsed from their metal staging, 
     he fell to the ground.


                           living with anger

       One day last month, Joseph, Jacqueline, Steve and Kathy 
     gathered to talk around the kitchen table at the younger 
     couple's home in Weymouth.
       Joseph Savoie retired in 1983 after 30 years as a Weymouth 
     firefighter, and built a house in Abington. All of the 
     couple's other children--Rhona Barone, David Savoie, Joann 
     Dunbar and Dan Savoie--have stuck close to home, settling in 
     either Weymouth or Abington. Another child, also named 
     Joseph, died of meningitis as an infant many years ago.
       But these days many of the family's traditionally 
     boisterous birthday and Christmas parties end in tears, so 
     they just don't get together as often. Joseph and Jacqueline 
     have 27 grandchildren, four great-grandchildren and two more 
     great-grandchildren on the way.
       ``I had everyone over for Christmas, and I tried to be 
     strong,'' Steve said. ``I didn't want to show my sadness. But 
     it was a terrible night for me.''
       Steve is one of the quieter members of the family, and his 
     parents and wife express many of the emotions one would 
     expect him to show. He holds it in.
       His wife is hopeful that he will live a long time. His 
     father is sad, and his tears come easily. When his parents 
     talk about the past 10 years, they both have have spurts of 
     anger.
       Everyone seems numb.
       ``There's no sudden impact,'' Joseph Savoie said. ``It's 
     not like you open the door and there it is. We live with each 
     new pain, day to day.''
       What makes Joseph and Jacqueline so mad is that all three 
     of their sons were born with mild cases of hemophilia, so 
     mild that if they'd known about the risk of contracting AIDS, 
     they would not have used the clotting product. They would 
     have waited out the pain of an internal injury, or checked 
     into a hospital for a transfusion, which would have greatly 
     lessened the chance of HIV infection.
       The more they've found out, the angrier they've become.
       Steve said the drug companies should have been purifying 
     their products with heat treatment long before AIDS became a 
     problem. There was suspicion as early as the 1970s that 
     hemophiliacs were contracting hepatitis from the blood 
     products.
       He said the National Hemophilia Foundation did not advise 
     members against injecting the products in the early 1980s 
     because it received financial support from the drug 
     companies, Rhone-Poulenc Rorer; Armour Pharmaceutical; Miles, 
     Baxter Healthcare; and Alpha Therapeutic.
       The manufacturers have said they acted as quickly as 
     possible, and that little was known about how AIDS was 
     transmitted.
       A recent report from the non-profit Institute of Medicine 
     said the FDA depended too heavily on company officials for 
     advice on whether to pull the products off the market.
       And even after the companies started the heat treatments in 
     1983, the companies kept selling the old product for two 
     years, according to Wendy Selig, assistant to Rep. Porter 
     Goss, the Florida Republican who proposed the compensation 
     legislation.
       Today many AIDS-infected hemophiliacs are pursuing 
     individual lawsuits. But in many states they are running into 
     obstacles, such as a statute of limitations.
       A few people are suing Worcester Memorial Hospital, and Dr. 
     Peter Levine, the former medical director of the hemophilia 
     clinic and now chief executive officer of the hospital. 
     Levine declined to comment.


                          tough to keep going

       Before he died, Phil Savoie served on the board of 
     directors of the Committee of Ten Thousand, which spearheaded 
     the class-action lawsuit against the drug companies.
       Steve used to ignore his brother's pleas for help with his 
     work.
       ``I was running from it,'' Steve said. ``I used to take the 
     documents he'd give me and just file them away. They made me 
     too upset.''
       Today he wishes he had done more then, and could do more 
     now. He would like people to pressure Congress to pass the 
     compensation bill.
       The family recently contacted one lawyer, but was told they 
     might not be able to sue successfully because of the state's 
     statute of limitations in such cases. The family plans to 
     investigate this further.
       And while Steve says he'd like to be more active in the 
     fight for compensation, it's become harder to maintain his 
     energy.
       He stopped working as a carpenter three years ago when he 
     came down with shingles. He remained fairly healthy until 
     November, when he had to check into Quincy Hospital twice for 
     bleeding in his esophagus. But mostly, he is just exhausted.
       ``I don't go out much anymore,'' he said. ``There are a lot 
     of lousy moments.''
       Steve and Kathy, an auto claims supervisor for a local 
     insurance company, don't have the physical relationship they 
     used to have. To feel close, they sit by a fire and talk. A 
     good day is like the one they spent in Hyannis in October, 
     visiting craft shops and stopping for lunch.
       While Kathy is working, Steve does laundry and housework--
     if he feels well enough.
       ``He'd rather remodel the entire house than do laundry,'' 
     Kathy said. The last few times he's felt energetic, Steve 
     built rollers for the kitchen drawers and put down a new 
     basement floor.
       He gives Kathy pop quizzes about what to do if something 
     goes wrong in the house.
       ``He's so afraid that I might not be able to keep things 
     going,'' she said. ``He's tried to pick out his funeral plot 
     and I won't. I hate all the planning. I don't want to throw 
     in the towel.''
       Sometimes they just sit and cry for hours.
       Steve tries to spend as much time as he can with his 
     children. He let them miss a day of school to go sledding. On 
     Thanksgiving eve, he baked nine pumpkin, squash and mincemeat 
     pies with the two teenagers, an effort that left him 
     exhausted and in bed the next day.
       ``We tell them I'm feeling good and doing all the right 
     things,'' he said. ``We just have to enjoy our time 
     together.''

                          ____________________