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Christopher Reeve Testimony: April 26, 2000

In a Senate hearing on the subject of "Federal Funding For Stem Cell Research", Christopher Reeve testified before the Subcommittee on Labor, Health and Human Services, and Education, and Related Agencies, Committee on Appropriations in favor of the United States government funding embryonic stem cell research.

STATEMENT OF CHRISTOPHER REEVE, ACTOR/DIRECTOR; CHAIRMAN, CHRISTOPHER REEVE PARALYSIS FOUNDATION

Senator Specter: We now turn to our third panel. We have Mr. Christopher Reeve, Ms. Jennifer Estess, and Dr. Lawrence Goldstein.

We thank you very much, Mr. Reeve, specially for your personal crusade on stem cells. We noted with America generally and the world the traumatic experience you had with your accident on horseback and the severing of your spinal column, but you have come back to lead this crusade in a very inspirational way. The current issue of Time magazine has your comments and pays special tribute to what you have done. I know that this is a matter of--well, it is of life concern to you. It is that important. Possible regeneration of your spinal column to enable you to fly again. So, we thank you for all of your extraordinary work here, and we thank you for being available to testify. We now turn the floor to you.

Chris Reeve Mr. Reeve: Well, thank you very much, Mr. Chairman. I appreciate the opportunity to be here to testify.

I would start by saying that in vitro fertility clinics have been around since the 1950's, and as far as I am aware, even though the Pope, of course, stated a position against it and it is a sin for a Catholic to use in vitro fertilization, there has not been an enormous outcry or protest. In other words, these clinics have existed in relative peace for nearly 40 years, and I do not understand why all of a sudden there is a huge issue about it, now that discarded embryos will be used for research instead of just being thrown into the garbage.

A critical factor in the quality of life for present and future generations will be what we do with human embryonic stem cells. These cells have the potential to cure disease and conditions ranging from Parkinson's and MS to diabetes, heart disease, to Alzheimer's, Lou Gehrig's, even spinal cord injuries like my own. They have been called the body's self- repair kit.

Their extraordinary potential is a recent discovery. And much basic research needs to be done before they can be sent to the front lines in the battle against diseases. But no obstacle should stand in the way of responsible investigation of their possibilities. To that end, the work should be turned over to the Federal Government through the National Institutes of Health. That will avoid abuses by for-profit corporations, avoid secrecy and destructive competition between laboratories, and ensure the widest possible dissemination of scientific breakthroughs. Human trials should be conducted either on the NIH campus or in carefully monitored clinical facilities.

Now, fortunately, stem cells are readily available and easily harvested. In fertility clinics, women are given a choice of what to do with unused fertilized embryos: they can be discarded, donated to research, or frozen for future use. Under NIH supervision, scientists should be allowed to take cells only from women who freely consent to their use for research. One very important factor is that this process would not be open-ended. Within 1 to 2 years, a sufficient number could be gathered and made available to investigators. So, for those reasons, the ban on federally funded human embryonic stem cell research should be lifted as quickly as possible.

Again, why has the use of discarded embryos for research suddenly become such an issue? Is it more ethical for a woman to donate unused embryos that will never become human beings or to let them be tossed away as so much garbage when they could help save thousands of lives?

Now, treatment with stem cells has already begun. They have been taken from umbilical cords and become healthy red blood cells used to cure sickle-cell anemia. Stem cell therapy is also being used against certain types of cancer. But those are cells that have significantly differentiated; that is, they are no longer pluripotent or capable of transforming into other cell types. For the true biological miracles that researchers have only begun to foresee, medical science must turn to undifferentiated stem cells. We need to clear the path for them as quickly as possible.

Now, controversy over the treatment of certain diseases is nothing new in this country. Witness the overwhelming opposition to Government funding of AIDS research in the early 1980's. For years, the Government tossed this issue around as a political football until a massive grassroots effort forced legislators to respond. And today NIH is authorized to spend approximately $1.8 billion annually on new protocols, and the virus is largely under control in the United States.

Now, at this point I wish to submit a letter of support from four theologians representing the Protestant, Catholic, Jewish, and Islamic faiths. They say:

Our opinions about embryonic stem cell research reflect several different religious perspectives: Jewish, Catholic, Protestant and Islam. While they do not represent a single voice from these religious communities, they do offer a collective belief that is based on similar views about certain moral and ethical questions.

According to our religious beliefs, all human life must be protected. However, they also indicate that there is a significant difference between an embryo suspended in liquid nitrogen that will never be implanted inside a womb and an unborn child who is already in the womb.

Our religious beliefs also stress the importance of compassion. Thus, we support embryonic stem cell research because it would use these frozen or otherwise discarded embryos to help ease the suffering of those with catastrophic diseases such as diabetes, Parkinson's, cancer, Alzheimer's, heart disease, osteoporosis and arthritis.

As theologians, we put a great deal of importance upon the need for ethical standards in biomedicine. Currently, stem cell research is being conducted solely in the private sector, where it is not subject to the important guidelines developed by the NIH, parameters that reflect critical input from ethicists and theologians. However, the guidelines would only come into effect with Federal funding, which is another reason we support moving forward with the research under NIH. In addition, Federal funding would not only speed the discovery of cures, but ensure infrastructure is in place that will guarantee ethical conduct and maximize the benefit to society.

Our religious beliefs tells us that embryonic stem cell research is worthy of Federal support for millions across the country who are suffering from diseases. We hope you will join us and support stem cell research through the NIH.

We look forward to your support for this research, as the lives of millions are counting on you.

And this is signed by Rabbi Elliot Dorff, Ph.D., who is Professor of Philosophy at the University of Judaism. It is signed by Nancy J. Duff, Ph.D., Associate Professor of Theological Ethics at Princeton Theological Seminary. It is signed by a name I cannot pronounce: Abdulaziz Sachedina. I cannot say this. Anyway, Islamic Ph.D., Department of Religious Studies at the University of Virginia. And in my opinion, most importantly, by Margaret Farley, Ph.D., who is Professor of Christian Ethics at the Yale University Divinity School, and she is a Catholic.

PREPARED STATEMENT

Finally, I wish to enter into the record a list of over 100 disease groups, clinicians, foundations, universities and medical schools, all of whom are supportive of me and my advocacy for stem cell research. You will see that in attachment 2.

But while we prolong the stem cell debate, millions continue to suffer. It is time to harness the power of Government and go forward. Thank you.

[The statement follows:]

Prepared Statement of Christopher Reeve

WE MUST PURSUE RESEARCH ON EMBRYONIC STEM CELLS.

With the life expectancy of average Americans heading as high as 85 to 90 years, it is our responsibility to do everything possible to protect the quality of life of the present and future generations. A critical factor will be what we do with human embryonic stem cells. These cells have the potential to cure diseases and conditions ranging from Parkinson's and multiple sclerosis to diabetes and heart disease, Alzheimer's, Lou Gehrig's disease, even spinal-cord injuries like my own. They have been called the body's self-repair kit.

Their extraordinary potential is a recent discovery. And much basic research needs to be done before they can be sent to the front lines in the battle against disease. But no obstacle should stand in the way of responsible investigation of their possibilities. To that end, the work should be funded and supervised by the Federal Government through the National Institutes of Health (NIH). That will avoid abuses by for- profit corporations, avoid secrecy and destructive competition between laboratories and ensure the widest possible dissemination of scientific breakthroughs. Human trials should be conducted either on the NIH campus or in carefully monitored clinical facilities.

Fortunately, stem cells are readily available and easily harvested. In fertility clinics, women are given a choice of what to do with unused fertilized embryos: they can be discarded, donated to research or frozen for future use. Under NIH supervision, scientists should be allowed to take cells only from women who freely consent to their use for research. This process would not be open ended; within one to two years a sufficient number could be gathered and made available to investigators. For those reasons, the ban on federally funded human embryonic stem cell research should be lifted as quickly as possible.

But why has the use of discarded embryos for research suddenly become such an issue? Is it more ethical for a woman to donate unused embryos that will never become human beings, or to let them be tossed away as so much garbage when they could help save thousands of lives?

Treatment with stem cells has already begun. They have been taken from umbilical cords and become healthy red cells used to cure sickle-cell anemia. Stem cell therapy is also being used against certain types of cancer. But those are cells that have significantly differentiated; that is, they are no longer pluripotent, or capable of transforming into other cell types. For the true biological miracles that researchers have only begun to foresee, medical science must turn to undifferentiated stem cells. We need to clear the path for them as rapidly as possible.

Controversy over the treatment of certain diseases is nothing new in this country: witness the overwhelming opposition to government funding of AIDS research in the early 1980's. For years the issue was a political football until a massive grass-roots effort forced legislators to respond. Today, the NIH is authorized to spend approximately $1.8 billion annually on new protocols, and the virus is largely under control in the United States.

In conclusion, I wish to submit a letter of support from four theologians representing the Protestant, Catholic, Jewish and Islamic faiths (see Attachment 1).

And finally, I wish to enter into the record a list of over 90 disease groups, clinicians, foundations, universities and medical schools, all of whom have endorsed my testimony (see Attachment 2).

While we prolong the stem cell debate, millions continue to suffer. It is time to harness the power of government and go forward.

Attachments.

Attachment 1
October 12, 1999.

Hon. J. Dennis Hastert,
House of Representatives,
Washington, DC.

Dear Representative Hastert: Our opinions about embryonic stem cell research reflect several different religious perspectives: Jewish, Catholic, Protestant and Islam. While they do not represent a single voice from these religious communities, they do offer a collective belief that is based on similar views about certain moral and ethical questions.

According to our religious beliefs, all human life must be protected. However, they also indicate that there is a significant difference between an embryo suspended in liquid nitrogen that will never be implanted inside a womb, and an unborn child who is already in the womb.

Our religious beliefs also stress the importance of compassion. Thus, we support embryonic stem cell research because it would use these frozen or otherwise discarded embryos to help ease the suffering of those with catastrophic diseases such as diabetes, Parkinson's, cancer, Alzheimer's, heart disease, osteoporosis and arthritis.

As theologians, we put a great deal of importance upon the need for ethical standards in biomedicine. Currently, stem cell research is being conducted solely in the private sector, where it is not subject to the important guidelines developed by the National Institutes of Health (NIH)--parameters that reflect critical input from ethicists and theologians. However, the guidelines would only come into effect with federal funding, which is another reason we support moving forward with the research under NIH. In addition, federal funding would not only speed the discovery of cures, but ensure infrastructure is in place that will guarantee ethical conduct and maximize benefit to society.

Our religious beliefs tell us that federal funding of embryonic stem cell research is worthy of federal support for millions across the country who are suffering from diseases. We hope you will join us and support stem cell research through the NIH.

We look forward to your support for this research, as the lives of millions are counting on you.

Sincerely,

Rabbi Elliot Dorff, Ph.D., Professor of Philosophy, University of Judaism

Margaret Farley, Ph.D., Professor of Christian Ethics, Yale University Divinity School

Nancy J. Duff, Ph.D., Associate Professor of Theological Ethics, Princeton Theological Seminary

Abdulaziz Sachedina, Ph.D., Department of Religious Studies, University of Virginia

Attachment 2

Editor's note: This is a list of over 100 disease groups, clinicians, foundations, universities and medical schools, all of whom are supportive of Christopher Reeve and his advocacy for stem cell research. This group of supporters was gathered with the assistance of the American Society for Cell Biology. For more information, please contact Tim Leshan at 301-530-7153 or at TLeshan@ascb.org.

AIDS Action
Alliance for Aging Research
Alpha One Foundation
ALS Association
American Association for Dental Research
American Association for the Advancement of Science
American Association for the Study of Liver Diseases
American Association of Anatomists
American Association of Immunologists
American Autoimmune Related Diseases Association
American College of Obstetricians and Gynecologists
American Dental Education Association
American Foundation for AIDS Research
American Gastroenterological Association
American Medical Association
American Parkinson Disease Association
American Pediatric Society
American Physiological Society
American Society for Biochemistry and Molecular Biology
American Society for Cell Biology
American Society for Clinical Nutrition
American Society for Microbiology
American Society for Pharmacology and Experimental Therapeutics
American Society for Reproductive Medicine
American Society of Hematology
American Society of Human Genetics
American Society of Pediatric Hernatology/Oncology
Americans for Medical Progress
Association for Research in Vision and Ophthalmology
Association of American Medical Colleges
Association of American Universities
Association of Independent Research Institutes
Association of Medical School Pediatric Department Chairs
Association of Professors of Medicine
Association of Subspecialty Professors
Bay Area Bioscience Center
Biophysical Society
Boston University Medical Center
Canavan Research Fund
Cancer Treatment Research Foundation
Candlelighters Childhood Cancer Foundation
Cedars-Sinai Medical Center
Christopher Reeve Paralysis Foundation
Coalition of Advocates for Research on the Eye (CARE)
College of American Pathologists
Cooley's Anemia Foundation
Coriell Institute for Medical Research
Council of Graduate Schools
Endocrine Society
Federation of American Societies for Experimental Biology
Foundation Fighting Blindness
FRAXA Research Foundation
Friends of the National Institute of Dental and Craniofacial Research
Genetics Society of America
Hadassah
Harvard University
International Foundation for Anticancer Drug Discovery
International Longevity Center--USA, Ltd.
International Myeloma Foundation
Interstitial Cystitis Association
Jeffrey Modell Foundation
Johns Hopkins University
Joint Steering Committee for Public Policy
Juvenile Diabetes Foundation International
Kidney Cancer Association
Lankenau Medical Research Center
Lombardi Cancer Center
Medical College of Wisconsin
Medical University of South Carolina
Memorial Sloan-Kettering Cancer Center
Mount Sinai School of Medicine
Myasthenia Gravis Foundation of America
National Alliance for Eye and Vision Research
National Alopecia Areata Foundation
National Association for Biomedical Research
National Association of State Universities and Land-Grant Colleges
National Childhood Cancer Foundation
National Coalition for Cancer Research
National Health Council
National Psoriasis Foundation
Oncology Nursing Society
Paralyzed Veterans of America
Parkinson's Action Network
Parkinson's Disease Foundation
Patients' Coalition for Urgent Research (CURe)
Prevent Blindness America
Project A.L.S.
The Protein Society
PXE International
Radiation Research Society
Research!America
Research Society on Alcoholism
Research to Prevent Blindness
RESOLVE, National Infertility Association
Sjogren's Syndrome Foundation
Society for Pediatric Research
Society for Women's Health Research
The Genome Action Coalition (TGAC)
Treatment Action Group (TAG)
University of California, San Diego School of Medicine
University of Minnesota
University of Rochester Medical Center
University of Washington
University of Wisconsin-Madison
UPMC Health System
Washington University School of Medicine
Weill Medical College of Cornell University

Senator Specter: Thank you very much, Mr. Reeve, for that very impressive testimony. We see your enthusiasm and your determination, notwithstanding your own personal situation, and we will work with you to try to get the research necessary to revitalize the spinal column.

We will make a part of the record, Mr. Reeve, the long list of groups, clinicians, foundations, universities, and medical schools which support stem cell research, which you have provided to us, together with the letter which you made available, and the record will be able to handle all those names we cannot pronounce.

Mr. Reeve: Thank you.



Editor's Note:

In testimony before the same Senate subcommittee on July 18, 2001, Mr Richard M. Doerflinger of the United States Conference of Catholic Bishops rebuked the following part of Christopher Reeve's testimony provided below:

"Now, treatment with stem cells has already begun. They have been taken from umbilical cords and become healthy red blood cells used to cure sickle-cell anemia. Stem cell therapy is also being used against certain types of cancer. But those are cells that have significantly differentiated; that is, they are no longer pluripotent, or capable of transforming into other cell types. For the true biological miracles that researchers have only begun to foresee, medical science must turn to undifferentiated stem cells."

The following excerpt from Mr. Doerflinger's testimony is reproduced to help clear up any confusion regarding this subject:

"Neglect - even misstatement - of recent scientific data was also evident in last year's testimony before this subcommittee by the Christopher Reeve Paralysis Foundation. Mr. Reeve, on behalf of the Foundation, testified that adult stem cells are no substitute for embryonic cells because they cannot be "pluripotent" but are confined to a narrow range of specialization. Yet a few weeks after that hearing, researchers funded by the NIH and the Christopher Reeve Paralysis Foundation published a study indicating that adult bone marrow stem cells "may constitute an abundant and accessible cellular reservoir for the treatment of a variety of neurologic diseases." The first sentence of the published study states: "Pluripotent stem cells have been detected in multiple tissues in the adult, participating in normal replacement and repair, while undergoing self-renewal. The authors cite eleven other studies in support of this observation. Their article, prepared under the aegis of Mr. Reeve's foundation, was received for publication in March 2000, before Mr. Reeve testified in April that adult stem cells cannot be pluripotent.

An author of that study, Dr. Darwin Prockop, told this subcommittee last year that the implications of his work should not be overstated and that he himself supports funding both embryonic and adult stem cell research. However, medical and patient groups have now tilted the pendulum so far toward outright denial of the facts about the promise of adult stem cell research that Dr. Prockop recently felt obliged to correct the record. Responding to an article that questioned the benefits of adult stem cells, he notes:

More than 20 years ago, Friedenstein and then others grew adult stem cells from bone marrow called mesenchymal stem cells or marrrow stronal cells (MSCs). MSCs differentiate into bone, cartilage, fat, muscle, and early progenitors of neural cells. Human MSCs can be expanded up to a billionfold in culture in about 8 weeks. Preliminary but promising results have appeared in the use of MSCs in animal models for parkinsonism, spinal cord defects, bone diseases, and heart defects. Also, several clinical trials are in progress. In addition, there are promising results with other adult stem cells that perhaps we may yet learn how to grow effectively."



106th CONGRESS

  2d Session
                                S. 2015

  To amend the Public Health Service Act to provide for research with 
                 respect to human embryonic stem cells.


_______________________________________________________________________


                   IN THE SENATE OF THE UNITED STATES

                            January 31, 2000

Mr. Specter (for himself and Mr. Harkin) introduced the following bill; 
     which was read twice and referred to the Committee on Health, 
                     Education, Labor, and Pensions

_______________________________________________________________________

                                 A BILL


 
  To amend the Public Health Service Act to provide for research with 
                 respect to human embryonic stem cells.

    Be it enacted by the Senate and House of Representatives of the 
United States of America in Congress assembled,

SECTION 1. SHORT TITLE.

    This Act may be cited as the ``Stem Cell Research Act of 2000''.

SEC. 2. RESEARCH ON HUMAN EMBRYONIC STEM CELLS.

    Part G of the Title IV of the Public Health Service Act (42 U.S.C. 
288 et seq.) is amended by inserting after section 498B the following:

``SEC. 498C. RESEARCH ON HUMAN EMBRYONIC STEM CELLS.

    ``(a) In General.--Notwithstanding any other provision of law, the 
Secretary may only conduct, support, or fund research on, or utilizing, 
human embryos for the purpose of generating embryonic stem cells in 
accordance with this section.
    ``(b) Sources of Embryonic Cells.--For purposes of carrying out 
research under paragraph (1), the human embryonic stem cells involved 
shall be derived only from embryos that otherwise would be discarded 
that have been donated from in-vitro fertilization clinics with the 
written informed consent of the progenitors.
    ``(c) Restrictions.--
            ``(1) In general.--The following restriction shall apply 
        with respect to human embryonic stem cell research conducted or 
        supported under subsection (a):
                    ``(A) The research involved shall not result in the 
                creation of human embryos.
                    ``(B) The research involved shall not result in the 
                reproductive cloning of a human being.
            ``(2) Prohibition.--
                    ``(A) In general.--It shall be unlawful for any 
                person receiving Federal funds to knowingly acquire, 
                receive, or otherwise transfer any human gametes or 
                human embryos for valuable consideration if the 
                acquisition, receipt, or transfer affects interstate 
                commerce.
                    ``(B) Definition.--In subparagraph (A), the term 
                `valuable consideration' does not include reasonable 
                payments associated with transportation, 
                transplantation, processing, preservation, quality 
                control, or storage.
    ``(d) Guidelines.--
            ``(1) In general.--The Secretary, in conjunction with the 
        Director of the National Institutes of Health, shall issue 
        guidelines governing human embryonic stem cell research under 
        this section, including the definitions and terms used for 
        purposes of such research.
            ``(2) Requirements.--The guidelines issued under paragraph 
        (1) shall ensure that--
                    ``(A) all Federal research protocols and consent 
                forms involving human embryonic stem cell research must 
                be reviewed and approved by an institutional review 
                board; and
                    ``(B) the institutional review board is empowered 
                to make a determination as to whether or not the 
                proposed research is in accordance with National 
                Institutes of Health Guidelines for Research Involving 
                Human Pluripotent Stem Cells.
    ``(e) Reporting Requirements..--Not later than January 1, 2001, and 
each January 1 thereafter, the Secretary shall prepare and submit to 
the appropriate committees of Congress a report describing the 
activities carried out under this section during the preceding fiscal 
year, and including a description of whether and to what extent 
research under subsection (a) has been conducted in accordance with 
this section.''.
                                 <all>


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