[Senate Hearing 108-831]
[From the U.S. Government Publishing Office]
S. Hrg. 108-831
S. 1509, THE PROPOSED ERIC AND BRIAN SIMON ACT OF 2003
=======================================================================
HEARING
BEFORE THE
COMMITTEE ON VETERANS' AFFAIRS
UNITED STATES SENATE
ONE HUNDRED EIGHTH CONGRESS
FIRST SESSION
__________
MARCH 9, 2004
__________
Printed for the use of the Committee on Veterans' Affairs
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COMMITTEE ON VETERANS' AFFAIRS
ARLEN SPECTER, Pennsylvania, Chairman
BEN NIGHTHORSE CAMPBELL, Colorado BOB GRAHAM, Florida
LARRY E. CRAIG, Idaho JOHN D. ROCKEFELLER IV, West
KAY BAILEY HUTCHISON, Texas Virginia
JIM BUNNING, Kentucky JAMES M. JEFFORDS, (I) Vermont
JOHN ENSIGN, Nevada DANIEL K. AKAKA, Hawaii
LINDSEY O. GRAHAM, South Carolina PATTY MURRAY, Washington
LISA MURKOWSKI, Alaska ZELL MILLER, Georgia
E. BENJAMIN NELSON, Nebraska
William F. Tuerk, Staff Director and Chief Counsel
Bryant Hall, Minority Staff Director and Chief Counsel
C O N T E N T S
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March 9, 2004
SENATORS
Page
Specter, Hon. Arlen, U.S. Senator from Pennsylvania.............. 1
Coleman, Hon. Norm, U.S. Senator from Minnesota.................. 1
WITNESSES
Simon, Douglas B., Veseli, Minnesota............................. 3
Prepared statement........................................... 4
Simon, Eric M., Veseli, Minnesota................................ 5
Prepared sattement........................................... 6
APPENDIX
Campbell, Hon. Ben Nighthorse, U.S. Senator from Colorado,
prepared statement............................................. 9
S. 1509, THE PROPOSED ERIC AND BRIAN SIMON ACT OF 2003
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TUESDAY, MARCH 9, 2004
U.S. Senate,
Committee on Veterans' Affairs,
Washington, DC.
The committee met, pursuant to notice, at 2:44 p.m., in
room SR-418, Russell Senate Office Building, Hon. Arlen Specter
(chairman of the committee) presiding.
Present: Senator Specter.
Also present: Senator Coleman.
STATEMENT OF HON. ARLEN SPECTER, U.S. SENATOR
FROM PENNSYLVANIA
Chairman Specter. Good afternoon, everyone. We are here
this afternoon to hear testimony from Mr. Douglas Simon, a man
who has endured a family tragedy of a tremendous nature, and
one of his sons, Eric Simon.
The plight of this family from Veseli, Minnesota, came to
my attention through my very good friend, Senator Norm Coleman.
I will defer now to Senator Coleman to introduce his
constituents and to make a statement concerning their
circumstances.
I do want to welcome both the elder and the younger Mr.
Simon to this committee hearing room. We are anxious to hear
your story, and not atypically, they have scheduled a vote,
which can happen at any time, and when the bills ring for a
vote, it takes precedence, even if we are in the White House.
Senator Coleman, thank you very much for your diligence
here and welcome to this committee. We look forward to your
presentation.
STATEMENT OF HON. NORM COLEMAN, U.S. SENATOR
FROM MINNESOTA
Senator Coleman. Thank you, thank you, Mr. Chairman. I want
to begin by expressing my deep appreciation for Chairman
Specter and his willingness to work with me, his deep
compassion, and I am just very, very, very appreciative. This
hearing would not have taken place without the actions of this
great chairman. So Mr. Chairman, thank you very, very much.
During the early 1980s, when we were literally just
beginning to learn what HIV/AIDS is and how it is transmitted,
there were many, many individuals who contracted the disease
through blood transfusions. Some of these individuals received
tainted blood as a result of injuries sustained while serving
in the United States Armed Forces. Mr. Douglas Simon, who is
here with us today, is one such individual.
Currently, the Veterans' Administration provides health
care to some 2,800 veterans who have contracted AIDS in this
manner. The VA also provides disability compensation to
veterans with AIDS and death and education benefits to the
families of veterans who succumb to AIDS. In this respect, the
VA treats AIDS like other service-related health conditions.
However, in an important way, AIDS is not like other
service-connected illnesses. AIDS can be directly transmitted
to spouses and unborn children of the service members, as we
will see.
Mr. Chairman, this is what happened in the case of Doug
Simon. However, by law, the VA cannot provide any sort of
benefits for illnesses contracted by these family members. I
leave it to Doug and Eric Simon, and Eric will testify. Brother
Brian is also here, so the family is here with us. But I leave
it to Doug and Eric to share with the committee in detail the
difficult experience with you. They can express what they have
endured better than I can.
But I will tell you that this is a family that has suffered
tremendously as the result of a service-related condition. Eric
and Brian's mom, Nancy, succumbed to AIDS after a brave and
long fight in 1996. Though they were much younger then, these
boys had already been through a lot. This family also mourned
the loss of Candace Simon, a beloved daughter and sister. This
beautiful, innocent young girl was taken by this horrible
disease in 1993, just three days before her sixth birthday.
This is tough stuff, very tough stuff, Mr. Chairman. This
is a painful tale to tell, painful beyond words. But I share it
with you to show what remarkable individuals sit before us
today. These young men have lost their mother and their sister
to AIDS and they have been tireless in taking care of their
sick father. These two young men have had to grow up very, very
quickly, Mr. Chairman, and words cannot convey how proud I am
of Eric and Brian, talk about courage and talk about character.
Unable to receive justice from the courts, the Simon family
is looking to Congress to correct this injustice. Last year, I
introduced S. 1509, the Eric and Brian Simon Act, as a starting
point for giving a fair deal to veterans and their families
with AIDS. So S. 1509 would provide a one-time $100,000 benefit
to veterans who receive AIDS as a result of a blood transfusion
from a service-related injury, spouses who contracted AIDS from
contact with the infected veteran, and offspring of the veteran
or spouse who are infected with HIV/AIDS at birth. In the event
the veteran or family member has already succumbed to AIDS, the
compensation would be given to survivors.
I would note, Mr. Chairman, there is precedence for this
type of compensation. The 1998 Ricky Ray bill provided a one-
time $100,000 compensation to individuals and their spouses who
contracted HIV/AIDS from hemophilia treatment. What I am
proposing is that we give the same kind of assistance to the
men and women who serve in our Armed Forces and their families.
Mr. Chairman, we have an obligation to care for our
veterans and their families. It is my hope that after hearing
our witnesses discuss the unique circumstances, the Congress
will take a serious look at developing a legislative fix to
care for veteran with AIDS and their families.
With this goal in mind, I can't think of a better chair to
have for this committee nor one more dedicated to our veterans
than you, Mr. Chairman, and I look forward to working with you
to right this wrong. Thank you once again for working with my
office to hold this important hearing.
I am honored to introduce to the committee Mr. Douglas
Simon, Mr. Eric Simon, accompanied by Mr. Brian Simon. Thank
you, Mr. Chairman.
Chairman Specter. Thank you very much, Senator Coleman, for
your outstanding work here and generally.
Thank you for joining us, Mr. Douglas Simon. We look
forward to your testimony. You may begin.
STATEMENT OF DOUGLAS B. SIMON, VESELI, MINNESOTA
Mr. Douglas Simon. Chairman Specter, Ranking Member Graham,
and other distinguished members of the committee, thank you for
this opportunity to testify to you about the Eric and Brian
Simon Act of 2003. It has been my goal to testify on Capitol
Hill about my life and battle with HIV, which I contracted
while serving our Army National Guard at Fort Benning, Georgia,
in 1983.
I wanted to share three thoughts. First, I believe my
family and others suffering the same horrible situation deserve
compensation for the military mistake in not screening my blood
transfusion. Shortly after my daughter Candace was born, I
found out that I contracted HIV after receiving a blood
transfusion at Martin Army Hospital. At first, the reality
didn't sink in. Then my wife and I saw our baby daughter
practically live her entire painful life in the Minneapolis
Children's Hospital. Candace survived on morphine and would
pray out loud to God that he would take her soon to heaven to
stop the pain. It was terrifying to witness my baby girl dying
so slowly and in so much pain.
Then the disease began to take its toll on me and my
family. As a result of this disease, I have suffered strokes,
encephalitis, staph, pneumonia, and loss of use of my bladder.
I am basically a paraplegic and suffer deep depression and
anxiety. Also, I take over 30 prescriptions per day. During the
past 20 years, I have spent my life in and out of hospitals. My
last hospital stay was January 2004.
Second, I know that they say life isn't fair, but it is
unjust that I am unable to seek compensation because of a
mistake made by the Federal Government and not a private
hospital. I have been unable to sue for damages. It is like
being punished for a crime I didn't commit.
Four months before my transfusion in 1983, April 1983, the
military adopted guidelines of the Food and Drug Administration
and recommended that people at high risk for contracting this
virus voluntarily refrain from donating blood.
Third, I would have been able to live a healthy and full
life if it were not for this transfusion. Instead, since my
surgery, I have been unable to work. My life is rapidly
diminishing. My wife and daughter have already died from HIV.
The Eric and Brian Simon Act of 2003 provides a gratuity to
the veterans, such as myself, spouses, and their children who
have contracted HIV or AIDS as the result of a blood
transfusion related to a service-connected disability and for
other purposes. This bill is right for veterans, spouses, and
their children who have been harmed by serving their country.
It provides a sense of justice and something to provide for my
sons after my life has ended due to the military's mistakes.
I ask you to consider with common sense and compassion the
Eric and Brian Simon Act of 2003. I thank you for your time. I
am available for questions.
Chairman Specter. Thank you very much, Mr. Simon. Thank you
very much for that very impressive testimony.
[The prepared statement of Mr. Douglas Simon follows:]
Prepared Statement of Douglas Simon, Veseli, Minnesota
Chairman Specter, Ranking Member Graham, and other distinguished
members of the committee. I would like to thank you for the opportunity
to be here today to talk about the Eric and Brian Simon Act of 2003.
I am very lucky to be here today to speak with you, thanks to
recent developments in medication to help fight the HIV/AIDS virus
which quickly took my wife and daughter. I contracted the AIDS virus
through a blood transfusion while serving our country in the National
Guard at Fort Benning, Georgia in 1983.
The blood I received (nine pints) had the virus. Six months
earlier, the FDA warned the military that blood was supposed to be
screened but that didn't happen and the military was neglectful.
Therefore, now I am here today bound to my wheelchair with the support
and love of my two sons, Brian & Eric Simon.
We did not find out about the virus until my daughter, Candace,
began getting sick. ``Daddy, my tummy hurts'' was a common complaint of
my little girl. Candace Rose Simon began to deteriorate slowly and
painfully while she was still a very little girl.
Tumors, coughing, and constant pain was hard for her. It tore me up
inside to see such a beautiful angel go through something so terrible.
It was also hard for my wife who has since passed away after Candace
died. Nancy, my wife, contracted the virus through me and then onto
Candace when she was born.
My two boys, Brian & Eric have been through hell watching their
mother and sister die. I can't imagine two young boys going through so
much pain and suffering.
No one deserves to go through this. There was a costly mistake made
and so we've been paying for it with enormous amounts of pain. I want
make sure that it doesn't happen. I believe there should be
compensation made for this mistake.
The Eric and Brian Simon Act of 2003 provides justice and a form of
compensation. I ask you to consider with common sense, compassion, and
consideration the Eric and Brian Simon Act of 2003.
THE DOUG SIMON STORY
Doug Simon joined the Minnesota Army National Guard shortly after
graduating from New Prague High School in Minnesota. In August 1983,
while on active duty at Fort Benning, he had surgery at the Martin Army
Community Hospital for sudden and severe bleeding.
To replace the blood he had lost, he required several transfusions.
Investigators eventually tracked Mr. Simon's blood transfusion to nine
donors, and one tested positive for HIV.
Four months before Mr. Simon's transfusions, the military adopted
US Food and Drug Administration HIV/AIDS screening regulations. Mr.
Simon returned home to Minnesota that December. Mr. Simon married his
high school sweetheart, Nancy and the couple together dreamed about
wanting a rambler home to share with four children and ``a perfect
rural Minnesota family life.''
They lived together, in Mrs. Simon's hometown, Veseli, Minnesota,
which has a population of 170. Mrs. Simon was a rural Minnesota
homemaker and Mr. Simon started a career as a painter and wallboard
installer. Mr. Simon enjoyed softball but within months of his
transfusion was unable to play anymore softball because of his brain
infection.
Together, Mr. and Mrs. Simon had three children, Brian, Eric, and
Candace. Candace Rose Simon died of AIDS, three days before her sixth
birthday. She contracted the virus either in utero or by breast
feeding. ``Daddy, my tummy hurts'' was a common complaint of Mr.
Simon's little girl and piercing words that he still clearly remembers.
Candace was hospitalized 10 times during the last two years of her
life.
``Tumors, coughing, and constant pain was hard for her. It tore me
up inside to see such a beautiful angel go through something so
terrible.'' Mr. Simon recalls.
Mrs. Simon became one of the nation's leading speakers on the HIV/
AIDS virus before she died after twelve years of battling the virus.
``Pretty soon everybody is going to know somebody with the AIDS
virus,'' she once predicted.
Mr. Simon has spent his post-military life shuttling back and forth
between his home in Veseli and hospitals in Minneapolis. He is now
confined to a wheel chair and his two sons have become his caregivers.
Brian and Eric, have been through hell watching their mother and
sister die and I can't imagine them going through so much more pain and
suffering, Mr. Simon maintains.
Brian, age 18, is currently unemployed. Eric, age 17, is currently
a senior at New Prague High and runs a landscaping and painting
business to ``make the ends meet.'' Daily, the two boys, give their dad
medicine and lift him in and out of his wheelchair.
They cook the meals, wash clothes and pick their father off the
ground when he falls from his wheelchair. They are not the typical
teenagers, instead they have been children raising their father.
``No one deserves to go through this. There was a costly mistake
made and so we've been paying for it with enormous amount of pain,''
Mr. Simon states. ``I want to make sure that it doesn't happen again. I
believe there should be compensation.''
The Brian and Eric Simon Act of 2003 provides a gratuity, justice,
and a sense of compassion, he concludes.
Chairman Specter. Mr. Eric Simon.
STATEMENT OF ERIC M. SIMON, VESELI, MINNESOTA
Mr. Eric Simon. Chairman Specter, Ranking Member Graham,
and other distinguished members of the committee, I would like
to thank you for the opportunity to speak to you today about my
and my brother's bill, the Eric and Brian Simon Act of 2003.
I am 18 years old, a senior at New Prague High School in
Minnesota. I have spent my entire life dealing with the effects
of AIDS. In 1992, the first tragedy struck in my family when my
baby sister died after fighting with AIDS through her short 5-
year life. She and I were very close and I miss her very much.
Next, in 1996, my mother, who was everything to me, took
her last breath while I was sitting next to her on her bed. She
had a very painful experience with HIV. She went from not being
able to care for her sons to losing her eyesight, and then not
being able to walk, and then eventually not being able to talk.
So now at this point, I had lost half of my family and all I
could think about is when I would lose the other half.
Today, I would like to share with you three thoughts.
First, I believe my family and others suffering with the same
horrible situation deserve compensation for the military's
mistake that led to my father contracting HIV. I am not the
typical teenager. Instead, I own and operate my own small
business to pay some of the family's bills. I help my father
get dressed and make sure he gets his medications daily.
I haven't been able to enjoy typical teenager activities.
Instead of playing hockey or other sports, I research the
Internet, learning about AIDS. I am caregiver for my father
while trying to cope with an illness that has killed my family.
I have had to witness burying two loved ones, and once every 2
weeks I typically bring my dad to the hospital for
appointments.
Sometimes I have to bring my dad to the hospital at 1
o'clock in the morning. I have been on call my entire life.
Sometimes I skip school to take care of my dad. I cook two
meals a day and I have had to be an adult taking care of my
dad. It has been hard to focus on schoolwork when my brother
and I are constantly caring for our father and worrying about
his health and how long he will be with us. He is my dad and I
love him.
Second, I may be a kid, but even I realize that my family
was wronged, and it is only right that we would receive some
sort of compensation. We can't file a wrongful death suit
because of legal rules. We can't collect any money. Do you
think that is right?
Third, I ask for your support and consideration. No one can
change my life, and I won't kid you. It has been hard. I pray
each day for my father's health. This is a bill that is right
for veterans, spouses, and children who have been harmed by
service to their country.
Today, I have told you what my childhood has been like.
Since 1996, I have been raising my dad and taking care of him.
I love my father. Living with AIDS is a painful, tragic thing
that creates fear, uncertainty, and sometimes hopeless dreams.
I ask you to consider with common sense, compassion, and
consideration the Eric and Brian Simon Act of 2003. Thank you
for this excellent opportunity today, and I am available for
your questions.
Chairman Specter. Thank you very much, Mr. Eric Simon.
[The prepared statement of Mr. Eric Simon follows:]
Prepared Statement of Eric Simon, Veseli, Minnesota
Chairman Specter, Ranking Member Graham, and other distinguished
members of the committee. We greatly appreciate the excellent
opportunity to come and give testimony for the Eric and Brian Simon Act
of 2003.
In 1983, my father, Doug Simon, was training in the Army National
Guard at Fort Benning in Georgia. During training he became ill and
required surgery. During his operation he received a blood transfusion.
The blood he was given was tainted with the AIDS virus which had not
been properly screened. My mother, Nancy, was pregnant with my older
brother, Brian. I, their second son, was born two years later with a
high risk of contracting the virus, but I didn't contract the disease.
Our family didn't learn about the nature of this terrible disease
until my little sister Candace (who was born in 1988) became terribly
ill. Our whole family was then tested and all but my brother and I
tested positive for HIV. Reality did not sink in for my parents right
away. My brother and I were still very young. From the time, we found
out about our misfortune to the time of my sister's death at the
Minneapolis Children's Hospital in Minnesota, we had dealt with very
much sadness and pain.
Candace was only a baby girl and she made her home at the hospital.
The rest of us often lived there as well. Candace's pain took a toll on
everyone. Why does someone that young have to deal with something so
large? Candace prayed to God to take her to heaven so she would have no
more pain and I'm very glad God took her to heaven and stopped her
pain, but it still left a deep wound in all of our hearts.
As my brother and I were getting older, we were realizing what our
life was turning into, a nightmare that we would never wake up from. We
still didn't know what path in life we would be forced to take since we
had two parents that were starting to feel the affects of the disease.
I grew up around cameras and newspapers which gave me a lot of
attention, but why did it have to be this type of attention? Why not
for a star player at a baseball game or for saving someone's life?
I remember having to bury my sister. I will always remember that.
My mother was becoming very ill in 1996 and was no longer able to care
for her two sons and the motherly role was passed on to my grandmother
and my aunt.
My parents were split up because of my sister's death and that just
made it twice as hard on my brother and me. My mother had wanted to die
out at my aunt's farm by New Prague, Minnesota. So we moved there to
wait for our mother's death. Every day consisted of the same thoughts;
thoughts of my mother dying and no longer being able to hug me and hold
me.
She began to lose her eyesight so she couldn't even see the
Mother's Day present that we made her in school. She could no longer
stand or go to the bathroom herself. She was in fear of death but on
the other hand she was excited to finally be with her baby daughter in
heaven. She had a morphine pack that she was able to push a button and
the morphine was electronically injected into her and that's how she
survived the pain. But, eventually nothing worked. She would cry and
cry and she became delusional on the thought of death.
My brother's and my mind were spinning in circles. We didn't know
who to talk to or what to say or even where to turn. Eventually, my
mother went into a coma and as weeks went on she began to look like a
skeleton and while I was next to her bed on that afternoon, my mother,
my everything, took her last breath. Since that day I have not cried, I
have seen it all and been through it all and I have no more tears left
to shed.
After the death of my mother, my brother and I moved in with our
father at his parent's house. My father had suffered a stroke and was
bound to a wheel chair. The only thought that was going through my mind
was how can I handle anymore death?
Is it even possible? So I feared for my father's death and I still
do everyday when I wake up in the morning and every night when I go to
bed.
During each day, my brother and I are my father's caregivers and
his life. We cook meals, wash clothes, make sure he takes his pills, we
pick him off the ground when he falls, drive him to the hospital weekly
and we still manage to have a normal life, or at least try to have a
normal life. I love my father very much and I'm the most thankful
person in the world to have what I have today, because my father is
everything to me.
This is my life story and the way it has been for me and still I'm
very thankful.
I ask you to consider the Eric and Brian Simon Act of 2003 to help
my family and to help any other families in the same situation as mine
and to also protect people and families that may fall victim to the
same military mistake in the future.
Veterans are what make this country our country, they protect it
and insure our safety, and to not consider this bill for my family and
for a military veteran would be wrong.
I ask you again to consider with common sense, compassion and
consideration, the Eric and Brian Simon Act of 2003.
Thank you for your time.
Chairman Specter. Thank you, Mr. Douglas Simon, for your
service as a Reservist. The Reservists are bearing the brunt of
the war today in Iraq and Afghanistan and being called around
the country. So there is no doubt about your great service to
your country. Thank you, Eric, for taking care of your father.
My inclinations are to support Senator Coleman. Before
making a final decision, I want to review to see what the
financial impact would be on the government--which is something
we have to consider--how many people would be similarly
situated. But there is no doubt. You are being given
disability, but that is hardly adequate for what has happened
and we understand that and there are potential benefits for
your sons' education only under certain circumstances.
We are about out of time. The vote has just occurred. I
think we have a full grasp of what is involved here and we will
consider it very, very carefully.
Again, I thank you, Senator Coleman, for bringing this to
the committee's attention.
Senator Coleman. Thank you, Senator Specter. Again, votes
kind of rule our timing and our life. I am told we have less
than a minute left.
Just a note. Mr. Simon would tell you that his care, his VA
care, was good. He got great health care, excellent. But the
reality is, this is a family that has never received an apology
from the government. His mom died, his wife, daughter, and
sister died and find themselves unable to receive anything to
compensate them, and certainly money can't compensate, but the
reality is this family has been through some very difficult
circumstances, Mr. Chairman.
I want to thank you again for allowing them to tell the
story as part of the official record. We will share it with
other members and hopefully go forth from here.
Chairman Specter. Thank you, Senator Coleman, and thank
you, Mr. Simon and Mr. Simon. Thank you.
We are going to run now. We have a vote and have to show up
on the Senate floor. The hearing is adjourned.
[Whereupon, at 2:58 p.m., the committee was adjourned.]
A P P E N D I X
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Prepared Statement of Hon. Ben Nighthorse Campbell, U.S. Senator
from Colorado
Good morning, Mr. Chairman. I thank you for convening this
hearing in which we will hear testimony on Senator Coleman's
bill,
S. 1509, which would provide benefits to veterans who
became infected with AIDS in the service from blood
transfusions. It would also provide benefits to the veteran's
family members who contracted the disease from the veteran.
I understand that these benefits would be provided from
mandatory funds and that there is no precedent for VA to payout
lump sum compensation benefits to veterans or their family
members. I further understand that the legislation is modeled
after the Ricky Ray Hemophilia Relief Act of 1998.
The fact that a number of veterans were given contaminated
blood while in the service of their country is tragic. And, I
believe the VA had an obligation to inform anyone immediately
upon the discovery of such a situation. However, there are a
number of questions that will have to be explored as we
consider this legislation. How many vets have contracted AIDs
through service-connected transfusions? Who will have the
burden of proof that the AIDS virus was contracted by
transfusion?
As a cosponsor of S. 1143, the Hepatitis C Epidemic Control
and Prevention Act, I know that many people with HIV are also
co-infected with Hepatitis C. Should the VA compensate family
members who contract Hepatitis C from a veteran?
I welcome Mr. Simon and his son Eric. I look forward to
their testimony as we begin to explore this issue.
Thank you, Mr. Chairman.