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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

(

Available via the World Wide Web: http://www.access.gpo.gov/congress/senate

(II)

COMMITTEE ON VETERANS’ AFFAIRS

ARLEN SPECTER, Pennsylvania, Chairman

BEN NIGHTHORSE CAMPBELL, Colorado

LARRY E. CRAIG, Idaho

KAY BAILEY HUTCHISON, Texas

JIM BUNNING, Kentucky

JOHN ENSIGN, Nevada

LINDSEY O. GRAHAM, South Carolina

LISA MURKOWSKI, Alaska

BOB GRAHAM, Florida

JOHN D. ROCKEFELLER IV, West Virginia

JAMES M. JEFFORDS, (I) Vermont

DANIEL K. AKAKA, Hawaii

PATTY MURRAY, Washington

ZELL MILLER, Georgia

E. BENJAMIN NELSON, Nebraska

WILLIAM F. TUERK, Staff Director and Chief Counsel

BRYANT HALL, Minority Staff Director and Chief Counsel

(III)

CONTENTS

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

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S. 1509, THE PROPOSED ERIC AND BRIAN

SIMON ACT OF 2003

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

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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 serviceconnected 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

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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.

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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.

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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

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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?

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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.

8

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.]

(9)

APPENDIX

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.

Æ