SARAH PALIN AND CHRISTOPHER REEVE: A Special Needs Parent Speaks Out

 

 

According to Sarah Palin, if John McCain is elected President, she will be put in charge of cure research.

 

Governor Palin states: "John and I have worked out a plan… My mission is going to be energy security and government reform. And another thing near and dear to my heart, it's going to be helping families who have special needs and children with special needs. And we're going to be pushing for innovative cures of diseases." *

 

Innovative cures?  Special needs families? As far as I know, Governor Palin's only background in either area is that she opposes embryonic stem cell research-- and that she has a six-month old baby with Down's Syndrome.    

 

At age 44, Ms. Palin chose to have a fifth child. When she found out the unborn child had Down's Syndrome, she chose to continue with the pregnancy.

 

Fair enough. Those were her choices, and choice is important for every woman.

 

But does she have any knowledge of the real world of special needs families?

 

Right now, her baby requires only normal infant care: to be fed and changed and loved. When the "special needs" part of his life begins, Governor Palin's income level will allow her to hire nannies and servants to care for her child.  

 

Most of us do not have Ms. Palin's advantages. For millions of American families, having a "special needs" member (a mentally or physically disabled person, old or young) means exhausting physical labors of care-giving, endless emotional stress, and bills we cannot afford.

 

At the age of nineteen, my son Roman Reed broke his neck in a college football accident. He was paralyzed from the shoulders down. The doctors gave us no hope: Roman would never walk again, they said: never close his fingers, probably never father a child; and, due to his shortened life expectancy, his mother Gloria and I might outlive our own son.

 

Before this happened, if I saw a person in a wheelchair, I never stopped to think how they got there. Who lifted them out of bed in the morning, helped them take a shower? Did they need assistance to use the rest room, to get dressed? Could they breathe on their own? If not, who changes the battery in their respirator? Who helps them turn over in bed during the night? Will she or he need to be institutionalized? If so, who will pay? 

 

Many families break up under this stress. John McCain, for example, divorced his first wife when she became disabled.  

 

If Ms. Palin truly wanted to be the "friend and advocate of special needs families", as she so perkily promised at the Republican Convention, she could begin by opposing John McCain's negative position on the Community Choice Act, which he says we cannot afford. The Community Choice Act would allow people with disabilities to receive government assistance at home, with their families, instead of being institutionalized. 

 

We do know Ms. Palin is in favor of government assistance, at least for herself, as she personally requested and received more than three hundred days travel pay (per diem) even though she was not actually traveling on those days.

 

In addition to care for special needs individuals, America must work for cures.

 

My family knows about this, up close and personal. California passed a law named after our son, the Roman Reed Spinal Cord Injury Research Act of 1999. It is just a small law, one and a half million dollars a year—but it made possible the nation's first state-funded embryonic stem cell research.

 

On March 1, 2002, opening day of the Roman Reed Laboratory at UC Irvine, I held in my hand a laboratory rat which had been paralyzed, but which now walked again-- and this while my son watched from his wheelchair.

 

The experiment was so successful that Geron Corporation funded further work on it, taking it all the way to the Food and Drug Administration, where it is currently being considered for human trials. If all goes well, newly paralyzed people may one day have the chance my son did not—to walk out of the hospital, instead of being condemned to a wheelchair for life.

 

Far more importantly, California voters passed a magnificent stem cell research program, to fund the science President George Bush so cruelly restricted.

 

And it was our son who suggested the official motto for that program, the California Institute for Regenerative Medicine, (CIRM): "Turning stem cells into cures."

 

Today, we have hope. But it would all be swept away by Sarah Palin.

 

Embryonic stem cell research would quite literally become against the law if Sara Palin and the GOP get their way. The official Republican platform calls for the complete prohibition of embryonic stem cell research, both public and private; even George Bush did not take such an extreme position.

 

Not only paralysis cure is at risk. We are fighting for relief from cancer, which killed my mother and older sister. Embryonic stem cell research is crucial in the battle against Alzheimer's, multiple sclerosis, stroke, diabetes, blindness—and Down's Syndrome.  In England, where the government supports it, embryonic stem cell research led to a clearer understanding of the causes of Down's Syndrome, an important step towards cure.

 

 

Which brings us to another choice for Sarah Palin—when cure does come, will she allow her son to become well?   

 

She might say no. There are people who do not accept medical treatment for religious reasons. X-rays were originally frowned on by some, because it was thought they might be used to see through women's clothing. Others said chicken pox was God's punishment for sin, and it was wrong to develop a vaccine to cure it. Even today folks may refuse blood transfusions; others believe in the power of healing by faith alone-- as is their right.

 

But should religion be allowed to block my son's chances to walk again? 

 

American families deserve access to the best care science can provide: to ease suffering and save the lives of our children, our brothers and sisters, and our neighbors too.

 

Our country has an estimated one hundred million citizens with incurable disease or disability. These are not just empty statistics, but our loved ones, members of your family and mine. They are the reason America supports stem cell research.

 

Also, we are plain common sense practical. We see the results of too many people not getting well. Last year, America spent $2 trillion dollars on health care—a mountain of money, more than all federal income taxes put together. Three-fourths of that went to the maintenance of people with chronic disease or disability, who will never be healed: except, perhaps, with stem cell research.

 

If we want affordable health care, we must support cure research. 

 

We will not be tricked into believing there are alternatives to embryonic stem cells that are just as good. Those arguments have been made for years. They were not true then, and they are not true now. If there is a cure for paralysis, fine: show it to me. But until then, politicians should not insult my intelligence by pretending those cures exist.   

 

To understand what an extreme position Sarah Palin and the Republican Party are taking on stem cell research, we need only compare the lists of groups who argued about a simple bipartisan bill expanding President Bush's restrictive embryonic stem cell research policies: the Stem Cell Research Expansion Act (Castle,DeGette).  

 

First, how many groups opposed the relaxation of restrictions? Seventeen. That's right, seventeen: and every one was a conservative religious and/or ideological organization.**

 

How many groups supported embryonic stem cell research? Five hundred and eighteen: every major scientific, educational, medical or patient rights group that took a position on the issue, including the American Medical Association.***

 

At the end of this article, you will find both lists: 17 against embryonic, 518 in favor. (If you want to print out the list be supporting groups, be warned: it is long, almost 14 pages.

 

I do not think Ms. Palin has a lot of scientific background.

 

For example, as Governor of Alaska, she wanted to spend several million dollars of taxpayer money killing wolves, shooting them from airplanes, figuring that would result in more moose for human hunters to kill. As wolves actually protect the moose population by killing the weak and sick, thereby preventing the spread of disease, Palin's plan to wipe out natural predators does not make a great deal of sense.

 

But her wolf-slaughter policy does remind me of something a farmer once said.

 

A fox in the henhouse will kill a chicken, he said, maybe take one along to eat later.

 

But a weasel will go blood crazy-- and kill every chicken in the coop.

 

John McCain says he supports embryonic stem cell research.  But to please the anti-science wing of his party, he would let an enemy of the research have influence over it.

 

Giving Sarah Palin power over research, is like tossing a weasel in the henhouse-- and pretending it will only supervise.

 

Enough.  As Barrack Obama said, in a one-word rejection of failed policies: enough.

 

I am tired of a White House which does not reflect my hopes for a better America. I want a President who will work on the problems with the idea of really solving them, not just smiling and waving at us from a platform.

 

And one thing more. I want to see the fulfillment of Christopher Reeve's great dream.

 

Years ago, our local school did a fundraiser for the paralyzed Superman. I wrote a play, and the kids in my multicultural club (True Colors) produced it, giving up their lunchtime all year to make it happen. We put on the play, charged admission, and sent $2,000 to the Christopher Reeve Paralysis Foundation. It wasn't much, but it came from the heart, and Superman responded.

 

 In a dictated letter our family will always treasure, Christopher Reeve said:

 

"One day, Roman and I will rise up from our wheelchairs, and walk away from them forever."

 

Cure did not come in time for Christopher Reeve. Our champion has fallen. But the flame of his faith still lights our way. Barack Obama has taken up the torch of scientific freedom, the power that lifted us to the moon, and accepts no limitations.

 

America will prevail.

 

*"Palin Outlines Four-Point Focus in McCain Administration. Says She'll Focus on Energy, Reform, Special Needs Care, and Disease Cures." --Scott Conroy, CBS News, September 15^th, 2008

 

**17 groups in opposition to embryonic stem cell research: 

Republican Study Committee. "H.R. 3 — Stem Cell Research Enhancement Act of 2007" Legislative Bulletin. January 10, 2007. 

National Right to Life Committee

US Conference of Catholic Bishops

Family Research Council

Christian Coalition

Concerned Women for America

Focus on the Family

Christian Medical Association

Eagle Forum

Traditional Values Coalition

Southern Baptist Convention

Susan B. Anthony List

Republican National Committee for Life

Cornerstone Policy Research

Culture of Life Foundation

Religious Freedom Coalition

Coral Ridge Ministries

Center For Reclaiming America

 

***518 Groups in favor of the Stem Cell Research Expansion Act (open letter, 13 pages long)

 

1 July 14, 2006 . U.S. Senate , Washington, DC 20510

 

Dear Senator:

We, the undersigned patient advocacy groups, health organizations, research universities, scientific societies, religious groups and other interested institutions and associations, representing millions of patients, scientists, health care providers and advocates, write you with our strong and unified support for H.R. 810, the Stem Cell Research Enhancement Act.  

 

Sincerely,

 

A O North America

AAALAC International

AARP

Abbott Laboratories

Acadia Pharmaceuticals

Accelerated Cure Project for Multiple Sclerosis

Adams County Economic Development, Inc.

AdvaMed (Advanced Medical Technology Association)

Affymetrix, Inc.

Albert Einstein College of Medicine of Yeshiva University

Alliance for Aging Research

Alliance for Lupus Research

Alliance for Stem Cell Research

Alnylam US, Inc.

Alpha-1 Foundation

ALS Association

Ambulatory Pediatric Association

AMDeC-Academic Medicine Development Co.

America on the Move Foundation

American Academy of Neurology

American Academy of Nursing

American Academy of Pediatric Dentistry

American Academy of Pediatrics

American Association for Cancer Research

American Association for Dental Research

American Association for Geriatric Psychiatry

American Association for the Advancement of Science

American Association of Anatomists

American Association of Colleges of Nursing

American Association of Colleges of Osteopathic Medicine

American Association of Colleges of Pharmacy

American Association of Neurological Surgeons/Congress of Neurological Surgeons

American Association of Public Health Dentistry

American Autoimmune Related Diseases Association

American Brain Coalition

American Chronic Pain Association

American College of Cardiology

American College of Medical Genetics

American College of Neuropsychopharmacology

American College of Obstetricians and Gynecologists

American College of Surgeons

American Council on Education

American Council on Science and Health

American Dental Association

American Dental Education Association

American Diabetes Association

American Federation for Aging Research

American Gastroenterological Association

American Geriatrics Society

American Institute for Medical and Biological Engineering

American Lung Association

American Medical Association

American Medical Informatics Association

American Medical Women's Association

American Pain Foundation

American Parkinson's Disease Association

American Parkinson's Disease Association (Arizona Chapter)

American Pediatric Society

American Physiological Society

American Psychiatric Association

American Psychological Association

American Public Health Association

American Society for Biochemistry and Molecular Biology

American Society for Bone and Mineral Research

American Society for Cell Biology

American Society for Clinical Pharmacology and Therapeutics

American Society for Microbiology

American Society for Neural Transplantation and Repair

American Society for Nutrition

American Society for Pharmacology and Experimental Therapeutics

American Society for Reproductive Medicine

American Society for Virology

American Society of Clinical Oncology

American Society of Critical Care Anesthesiologists

American Society of Hematology

American Society of Human Genetics

American Society of Nephrology

American Society of Tropical Medicine and Hygiene

American Surgical Association

American Surgical Association Foundation

American Thoracic Society

American Thyroid Association

American Transplant Foundation

Americans for Medical Progress

amFAR, The Foundation for AIDS Research

Arizona State University College of Nursing

Arthritis Foundation

Arthritis Foundation, Rocky Mountain Chapter

Association for Clinical Research Training

Association for Medical School Pharmacology Chairs

Association for Prevention Teaching and Research

Association for the Accreditation of Human Research Protection Programs, Inc.

Association of Academic Chairs of Emergency Medicine

Association of Academic Departments of Otolaryngology

Association of Academic Health Centers

Association of Academic Physiatrists

Association of American Medical Colleges

Association of American Physicians

Association of American Universities

Association of American Veterinary Medical Colleges

Association of Anatomy, Cell Biology and Neurobiology Chairs

Association of Anesthesiology Program Directors

Association of Black Cardiologists

Association of Chairs of Departments of Physiology

Association of Independent Research Institutes

Association of Medical School Microbiology and Immunology Chairs

Association of Medical School Pediatric Department Chairs

Association of Medical School Pharmacology Chairs

Association of Professors of Dermatology

Association of Professors of Human and Medical Genetics

Association of Professors of Medicine

Association of Public Health Laboratories

Association of Reproductive Health Professionals

Association of Schools and Colleges of Optometry

Association of Specialty Professors

Association of University Anesthesiologists

Assurant Health

Asthma and Allergy Foundation of America

Athena Diagnostics

Aurora Economic Development Council

Axion Research Foundation

B'nai B'rith International

Baylor College of Medicine

Baylor College of Medicine Graduate School of Biomedical Sciences

Biotechnology Industry Organization

BloodCenter of Wisconsin, Inc.

Blue Cross and Blue Shield Foundation on Health Care

Boston Biomedical Research Institute

Boston University School of Dental Medicine

Boston University School of Public Health

Brigham and Women's Hospital

Bristol-Myers Squibb Company

Broadened Horizons, LLC

Brown Medical School

Buck Institute for Age Research

Burns & Allen Research Institute

Burrill & Company

Burroughs Wellcome Fund

Colorectal Cancer Coalition

California Biomedical Research Association

California Insitute of Technology

California Institute for Regenerative Medicine

California Wellness Foundation

Californians for Cures

Campaign for Medical Research

Cancer Research and Prevention Foundation

Canon U.S. Life Sciences, Inc.

Case Western Reserve University School of Dentistry

Case Western Reserve University School of Medicine

Cedars-Sinai Health System

Center for the Advancement of Health

Central Conference of American Rabbis

CFIDS Association of America

Charles R. Drew University of Medicine and Science

Charles River Laboratories

Child & Adolescent Bipolar Foundation

Children's Memorial Research Center

Children's Neurobiological Solutions Foundation

Children's Research Institute (Columbus)

Children's Research Institute (Washington)

Children's Tumor Foundation

Childrens Hospital Boston

Christopher Reeve Foundation

City and County of Denver

City of Hope National Medical Center

Cold Spring Harbor Laboratory

Coleman Institute for Cognitive Disabilitites, University of Colorado System

Colfax Marathon Partnership, Inc.

Colorado Bioscience Association

Colorado Office of Economic Development and International Trade

Colorado State University

Columbia University

Columbia University College of Dental Medicine

Columbia University Medical Center

Community Health Partnership

Conference of Boston Teaching Hospitals

Connecticut United for Research Excellence, Inc.

Conquer Fragile X Foundation

Cornell University

Council for the Advancement of Nursing Science (CANS)

Creighton University School of Medicine

CURE (Citizens United for Research in Epilepsy)

Cure Alzheimer's Fund

Cure Paralysis Now

CuresNow

Damon Runyon Cancer Research Foundation

Dana-Farber Cancer Institute

Dartmouth Medical School

David Geffen School of Medicine at UCLA

DENTSPLY International

Digene Corporation

Discovery Partners International

Doheny Eye Institute

Drexel University College of Medicine

Drexel University School of Public Health

Duke University Medical Center

Dystonia Medical Research Foundation

East Tennessee State University James H. Quillen College of Medicine

Eli Lilly and Company

Elizabeth Glaser Pediatric AIDS Foundation

Emory University

Emory University Nell Hodgson Woodruff School of Nursing

Emory University Rollins School of Public Health

Emory University School of Medicine

FasterCures

FD Hope Foundation

Federation of American Scientists

Federation of American Societies for Experimental Biology (FASEB)

Federation of State Medical Boards of the United States, Inc.

Fertile Hope

Fitzsimons Redevelopment Authority

Florida Atlantic University Division of Research

Ford Finance, Inc.

Fox Chase Cancer Center

Fred Hutchinson Cancer Research Center

Friends of Cancer Research

Friends of the National Institute for Dental and Craniofacial Research

Friends of the National Institute of Nursing Research

Friends of the National Library of Medicine

Genetic Alliance

Genetics Policy Institute

George Mason University

Georgetown University Medical Center

Guillain Barre Syndrome Foundation International

Gynecologic Cancer Foundation

Hadassah

Harvard University

Harvard University School of Dental Medicine

Harvard University School of Public Health

Hauptman-Woodward Medical Research Institute, Inc.

Hereditary Disease Foundation

HHT Foundation International, Inc.

Home Safety Council

Howard University College of Dentistry

Howard University College of Medicine

Huntington's Disease Society of America

IBM Life Sciences Division

Illinois State University Mennonite College of Nursing

ImmunoGen, Inc.

Indiana University School of Dentistry

Indiana University School of Medicine

Indiana University School of Nursing

Infectious Diseases Society of America

Institute for African American Health, Inc.

Intercultural Cancer Council Caucus

International Foundation for Anticancer Drug Discovery (IFADD)

International Longevity Center – USA

International Society for Stem Cell Research

Invitrogen Corporation

Iraq Veterans for Cures

Iris Alliance Fund

Iron Disorders Institute

Jacobs Institute of Women's Health

Jeffrey Modell Foundation

Johns Hopkins

Johnson & Johnson

Joint Commission on Accreditation of Healthcare Organizations (JCAHO)

Joint Steering Committee for Public Policy

Juvenile Diabetes Research Foundation

Keck School of Medicine of the University of Southern California

Kennedy Krieger Institute

Keystone Symposia on Molecular and Cellular Biology

KID Foundation

Kidney Cancer Association

La Jolla Institute for Allergy and Immunology

Lance Armstrong Foundation

Lawson Wilkins Pediatric Endocrine Society

Leukemia and Lymphoma Society

Lombardi Comprehensive Cancer Center, Georgetown University

Los Angeles Biomedical Research Institute at Harbor-UCLA Medical Center

Louisiana State University Health Sciences Center

Louisiana State University Health Sciences Center School of Dentistry

Lovelace Respiratory Research Institute

Loyola University of Chicago Stritch School of Medicine

Lung Cancer Alliance

Lupus Foundation of America, Inc.

Lupus Foundation of Colorado, Inc.

Lupus Research Institute

Lymphatic Research Foundation

Mailman School of Public Health of Columbia University

Malecare Prostate Cancer Support

March of Dimes Birth Defects Foundation

Marine Biological Laboratory

Marshalltown [IA] Cancer Resource Center

Masonic Medical Research Laboratory

Massachusetts Biotechnology Council

Massachusetts General Hospital

Massachusetts Institute of Technology

MaxCyte, Inc.

McLaughlin Research Institute

Medical College of Georgia

Medical University of South Carolina

Medical University of South Carolina College of Nursing

MedStar Research Institute (MRI)

Meharry Medical College School of Dentistry

Memorial Sloan-Kettering Cancer Center

Memory Pharmaceuticals

Mercer University

Metro Denver Economic Development Corporation

Miami Children's Hospital

Midwest Nursing Research Society

Morehouse School of Medicine

Mount Sinai Medical Center

Mount Sinai School of Medicine

National Alliance for Eye and Vision Research

National Alliance for Hispanic Health

National Alliance for Research on Schizophrenia and Depression

National Alliance on Mental Illness

National Alopecia Areata Foundation

National Asian Women's Health Organization

National Association for Biomedical Research

National Association of Hepatitis Task Forces

National Caucus of Basic Biomedical Science Chairs

National Coalition for Cancer Research

National Coalition for Cancer Survivorship

National Coalition for Women with Heart Disease

National Committee for Quality Health Care

National Council of Jewish Women

National Council on Spinal Cord Injury

National Down Syndrome Society

National Electrical Manufacturers Association

National Foundation for Ectodermal Dysplasias

National Health Council

National Hemophilia Foundation

National Hispanic Health Foundation

National Jewish Medical and Research Center

National Marfan Foundation

National Medical Association

National Multiple Sclerosis Society

National Osteoporosis Foundation

National Partnership for Women and Families

National Pharmaceutical Council

National Prostate Cancer Coalition

National Quality Forum

National Spinal Cord Injury Association

National Venture Capital Association

Nebraskans for Research

Nemours

New Jersey Association for Biomedical Research

New Jersey Dental School

New York Blood Center

New York College of Osteopathic Medicine

New York State Association of County Health Officials

New York Stem Cell Foundation

New York University College of Dentistry

New York University School of Medicine

NewYork-Presbyterian Hospital

North American Brain Tumor Coalition

North Carolina Association for Biomedical Research

Northwest Association for Biomedical Research

Northwestern University

Northwestern University, The Feinberg School of Medicine

Nova Southeastern University College of Dental Medicine

Novartis Pharmaceuticals

Oklahoma Medical Research Foundation

Oral Health America

Oregon Health & Science University

Oregon Health & Science University School of Nursing

Oregon Research Institute

Oxford Bioscience Partners

Pacific Health Research Institute

Paralyzed Veterans of America

Parent Project Muscular Dystrophy

Parkinson's Action Network

Parkinson's Disease Foundation

Partnership for Prevention

Pennsylvania Society for Biomedical Research

Pharmaceutical Research and Manufacturers of America

Pittsburgh Development Center

Princeton University

Project A.L.S.

Prostate Cancer Foundation

Pseudoxanthoma Elasticum International

Quest for the Cure

RAND Health

Research!America

Resolve: The National Infertility Association

RetireSafe

Rett Syndrome Research Foundation

Rice University

Robert Packard Center for ALS Research at Johns Hopkins

The Rockefeller University

Rosalind Franklin University of Medicine and Science

Rush University Medical Center

Rutgers University

Salk Institute for Biological Studies

sanofi-aventis

Scleroderma Research Foundation

Secular Coalition for America

Sjogren's Syndrome Foundation, Inc.

Society for Advancement of Violence and Injury Research (SAVIR)

Society for Assisted Reproductive Technology

Society for Education in Anesthesia

Society for Male Reproduction and Urology

Society for Neuroscience

Society for Pediatric Research

Society for Reproductive Endocrinology and Infertility

Society for Women's Health Research

Society of Academic Anesthesiology Chairs

Society of General Internal Medicine

Society of Gynecologic Oncologists

Society of Reproductive Surgeons

Society of University Otolaryngologists

South Alabama Medical Science Foundation

South Dakota State University

Southern Illinois University School of Medicine

Spina Bifida Association of America

Stanford University

State University of New York at Buffalo School of Dental Medicine

State University of New York Downstate Medical Center College of Medicine at Brooklyn

State University of New York Upstate Medical University

Stem Cell Action Network

Stem Cell Research Foundation

Steven and Michele Kirsch Foundation

Stony Brook University, State University of New York

Strategic Health Policy International, Inc.

Student Society for Stem Cell Research

Suicide Prevention Action Network-USA (SPAN)

Take Charge! Cure Parkinson's, Inc.

Targacept, Inc.

Temple University School of Dentistry

Texans for Advancement of Medical Research

Texas A&M University Health Science Center

Texas Medical Center

Texas Tech University Health Sciences Center

The Arc of the United States

The Association for Research in Vision and Ophthalmology

The Biophysical Society

The Brody School of Medicine at East Carolina University

The Burnham Institute

The CJD Foundation

The Critical Path Institute (C-Path)

The Endocrine Society

The FAIR Foundation

The Food Allergy and Anaphylaxis Network

The Food Allergy Project, Inc.

The Forsyth Institute

The Foundation Fighting Blindness

The George Washington University Medical Center

 

The Georgetown University Center for the Study of Sex Difference in Health, Aging and Disease

The Gerontological Society of America

The J. David Gladstone Institutes

The Jackson Laboratory

The Johns Hopkins University Bloomberg School of Public Health

The Johns Hopkins University School of Nursing

The Medical College of Wisconsin

The Medical Foundation, Inc.

The Michael J. Fox Foundation for Parkinson's Research

The Ohio State University College of Dentistry

The Ohio State University College