[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.''

____________________