ACTION ALERT:

Petition to the Institute of Medicine committee
on the National Cord Blood Stem Cell Bank Program

(If you are having trouble reading the petition or list of Donor Concerns,
please click here to go to versions with no decorative borders.)

 

 

Cord Blood Donor Concerns

 

 

Background on the Institute of Medicine study

The United States Congress has begun considering legislation to create a National Cord Blood Stem Cell Program. The proposed program would operate a national network of public banks that would accept cord blood donations from expectant parents. The stated purpose of the program is to accumulate a national supply of cryogenically preserved cord blood which can be used to treat patients who require blood stem cell transplants. At present, many cancer patients cannot find adult donors who can provide matched blood and marrow stem cells, and this is particularly true for patients who are members of racial/ethnic minority groups (Ref-1).

The legislation to create a National Cord Blood Stem Cell Program was originally introduced in the House of Representatives in July 2003 as bill HR2852, and was reiterated in the Senate in Oct 2003 as bill S1717. Both can be read by searching the Congressional Record at thomas.loc.gov . The bills are currently in committee.

The draft bills for the National Cord Blood Stem Cell Program were proposed at the prompting of the New York Blood Center (NYBC), one of the world's oldest and largest public cord blood banks. The NY Blood Center proposes to use federal seed money to start a network of public cord blood banks, completely independent of any existing institutions for blood banking, which they believe will become self-supporting within a few years.

Meanwhile, the National Marrow Donor Program (NMDP), a federal program administered by the Health Resources and Services Administration (HRSA) Dept. of Transplantation, is already maintaining a national network of public cord blood banks. The combined inventory of cord blood units in the existing NMDP bank network is slightly larger than the inventory of the NY Blood Center. At the same time, the reauthorization of NMDP funding, which occurs once every five years, is currently on hold. The National Bone Marrow Donor Registry Reauthorization Act was introduced in the House of Representatives as bill HR3034. A Senate version has not yet been drafted, and the matter is still in a study committee.

Politicians and consumers alike have questioned what form a National Cord Blood Stem Cell Program should take. Should it be a separate agency, as proposed? Should it become part of the National Marrow Donor Program, which already coordinates patient searches for various sources of stem cells? Or should it be some compromise between the two organizational structures?

At the end of the 2003 legislative session, the Department of Health and Human Services (HHS) appropriations act set aside $10 million for the establishment of the National Cord Blood Stem Cell Bank Program. However, HHS stipulated that $9 million of this money cannot be released until after a panel of experts has studied the matter and issued a report on how best to run the program. The Health Resources and Services Administration has commissioned an Institute of Medicine (IoM) study of the National Cord Blood Stem Cell Bank Program . The Institute of Medicine was charged to appoint a committee of experts who will study the issues, hold meetings , and issue a report with recommendations. The committee, which held its first meeting on 2 June 2004, must complete its deliberations by the end of December, and issue a report of findings and recommendations by March 2005.

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Mission of Petition: Include Consumer Voices in Planning Process

This petition is addressed to the members of the IoM committee for the National Cord Blood Stem Cell Program, as well as to the general public.

We are writing as concerned citizens who wish to promote ethical recruitment of cord blood stem cell donors and ethical stem cell transplantation practices. Our purpose in writing this letter is to ensure that consumer concerns are fully included in your deliberations. We have also prepared a summary of Cord Blood Donor Concerns . The concerns we list are valid regardless of who administers the National Cord Blood Stem Cell Program.

Representation of those who have a stake in public policy is a fundamental American principle. The banking and transplantation of umbilical cord stem cells is not just a medical procedure, but a significant human endeavor that directly involves individuals and families anticipating both life and death. Therefore it is essential that our voices be heard in the process of planning a program that will effect many of us, our loved ones, and fellow citizens directly.

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Consumer Groups who will use a National Cord Blood Program

We wish to clarify that there are two distinct groups of "consumers" who have a vital stake in a National Cord Blood Stem Cell Program.
 

(1) Patients who need blood stem cells.
At present these are mostly patients who are in need of hematopoietic (blood) stem cell transplants from unrelated donors, to treat cancers and disorders of the blood and immune system. In the future, it may be possible to use stem cells for regenerative medical therapies.

(2) Parents who might donate their newborn's cord blood to the program.
Mothers who are in good health and expecting a single baby will be sought to donate their baby's umbilical cord blood. At present, due to a lack of funding, cord blood is only stored for the public good in a few regional banks and listed in existing donor registries. There is also a for-profit industry that offers private cord blood storage to families that can afford it. These two banking practices overlap, as some banks offer both public and private storage. The programs which accept public donations are regulated by the FDA, whereas strictly private banks are registered, but not regulated, by the FDA.
 

These two consumer groups have distinct needs and priorities, which sometimes may conflict.

Only 30% of patients who need a stem cell transplant can find an adult donor in their genetic family (Ref-2). The remaining 70% of patients who seek unrelated donors have an urgent need to find matching stem cells, whether from adult bone marrow, adult peripheral blood, or newborn cord blood. Patients need to be served by a system that will conduct stem cell searches in a manner that is as efficient, thorough, humane, and economical as possible. The majority of adults who are registered as potential donors are Caucasians (Ref-1). Thus, patients who come from racial or ethnic minorities are at a serious disadvantage in their ability to find a matching adult donor. However, cord blood donors do not have to be as precisely "matched" to the patient as adult donors. Thus, cord blood makes stem cell transplants accessible to many more patients. For this reason cancer patients, and especially minority group cancer patients, have a vested interest in having parents donate their newborn's cord blood to a National Cord Blood Program.

Conversely, many expectant parents are driven by the desire to protect their own offspring, before any altruistic urge to benefit society. At the same time that the National Cord Blood Program will attempt to recruit parents as potential donors, there are private cord blood banks that will market to parents as potential customers. For those parents who can afford it, private banks offer the option to preserve their child's cord blood for family use. The parents retain control over the disposition of the cord blood. There is a great deal of debate over the degree of "medical insurance" that is realistically provided by family banking of cord blood. Regardless of current claims, the fundamental fact is that no one can confidently predict the future of medical advances. Thus, expectant parents feel torn between the advice of professional societies (Ref-3, 4, 5) versus the medical research advances publicized in the media (Ref-6).

The decision of whether and how to store cord blood is even more urgent for parents who have a history of cancer in their family. At present, there are very few free storage programs available to them. Children's Hospital of Oakland offers free cord blood banking to full siblings of children who have a disease treatable by transplant, through their Sibling Donor Cord Blood Program , funded by a grant from the National Heart, Lung, and Blood Insititute (NHLBI) . Other families whose members have a disease treatable by transplant may apply to the Designated Transplant Program (DTP) , a charitable service of the private bank Cord Blood Registry . Those families which have a history of cancer and other diseases treated by transplant could benefit greatly from a national program of public cord blood banking, if they had a high probability of retrieving their donation, or a matching donation, in the event of need.

The present composition of the Institute of Medicine committee to study the National Cord Blood Stem Cell Bank Program (as of 23 July 2004) has:
no members who represent stem cell transplant patients, and
no members who represent cord blood donor families, and
no members who represent minority group interests.

We urge the Institute of Medicine to address all consumer groups in an equitable manner.

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Sizes of Consumer Groups

The total number of transplants reported in North America was 17,700 in 2002 (Ref-7). This number is taken from the data base of the International Bone Marrow Transplant Registry (IBMTR) and the Autologous Blood and Marrow Transplant Registry (ABMTR): The numbers from the IBMTR/ABMTR database include all forms of transplants, both adult and child, both autologous and allogeneic, both related and unrelated.

The number of babies born each year in the United States is approximately 4 million (Ref-8). Almost every birth is an opportunity to bank umbilical cord blood. As the decision to donate cord blood is typically made by both parents, the donor constituency numbers approximately 8 million people.

Comparing the sizes of the two consumer groups, the ratio of expectant parents to transplant patients is 452 to 1.

While the Institute of Medicine committee to study the National Cord Blood Stem Cell Bank Program intends to hold hearings on "patients rights", there are no meetings planned so far to discuss the rights of donor families. Furthermore, at the present time, the only opportunity for the public to address the committee on consumer issues will be during a comment period at the close of the meeting on 19 Aug 2004.

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Perceived Bias Against Donors

The medical professionals who have been invited to participate in the Institute of Medicine study of the National Cord Blood Stem Cell Bank Program have backgrounds primarily in oncology and public blood banking. For these professionals, cord blood may be primarily seen as a "manufactured product" (Ref-10) that they wish to produce and deliver to patients. The perspective of oncologists was expressed in a letter submitted to the Institute of Medicine by the American Society of Hematology , representing 13,000 members. The letter states that, when cord blood is donated, there is "no need for further involvement of the donor or their family."

We frequently hear the adage that "cord blood can be harvested with no risk to mother or baby" (emphasis added), and that it is merely a medical waste product. But, when you consider that the multi-potent stem cells found in cord blood can only be harvested once in a person's lifetime, it is clear that the choice of whether to save those cells, and with whom to entrust them, is a critical decision for parents.

Because cord blood is irreplaceable, its ethical status is comparable to that of organ donation. We implore the Institute of Medicine to hold hearings on the concerns of cord blood donor families, and to accord cord blood donors the same status as other living donors.

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Donor Demographics and Health Disparities

As noted above, cord blood transplants can help redress the disparity of minority patient access to matching stem cells. In this context, we note that in the US population, birthrates are higher among certain minority groups (Ref-8, 9). Thus, the very minority groups that are least likely to find matching adult stem cell donors, and hence could benefit more from cord blood donations, are also generating disproportionally more opportunities to harvest cord blood. Another population group that could benefit greatly from public cord blood banking are inter-racial people. Currently, 1 in 20 US babies, and 1 in 6 in some parts of the country, is considered inter-racial (Ref-11). These inter-racial children are creating a growing population that is not represented by the adult members of stem cell donor registries.

Another demographic feature of potential donor families is that of socio-economic status (SES). Lower-income families in the United States tend to:

  • have higher birthrates,
  • give birth at younger ages,
  • have less education,
  • be more likely to be members of racial/ethnic minority groups including immigrants, and
  • be over-represented among the uninsured and medically underserved.
Unless the National Cord Blood Stem Cell Bank Program is well-designed from a sociological viewpoint, it could generate a dynamic wherein poor parents would be sought after to provide a medical resource that is only accessible to families with health insurance or sufficient income to afford costly stem cell transplants. Such a disparity between the groups providing a medical resource and the recipients would generate charges of exploitation.

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Learning from Past Recommendations

The philosopher George Santayana wrote, "Those who fail to learn the lessons of history are doomed to repeat them." This seems to be true in the field of ethical considerations pertaining to cord blood banking. Study after study has made the same recommendations, yet they still are not implemented. For example:
  • In 1997, a Working Group on Ethical Issues in Umbilical Cord Blood Banking published, among other findings, the conclusion that "secure linkage should be maintained of stored UCB to the identity of the donor" and "more data are needed to ensure that recruitment for banking and use of UCB are equitable" (Ref-12).
  • In 2000, at the Unrelated Allogeneic Cord Blood Banking and Transplant Forum, Dr. Cladd Stevens of the NY Blood Center testified that "What is really complex about this donor situation, and I think maybe one of the most complicated donor systems in the world to my view, is that this process takes place, it involves two people, both the mother and the baby and the delivered placenta in this case, but the collection of the associated data over a several day period of time, and all of the stuff--all of the stuff--all of this information and samples must be linked accurately." (Ref-13)
  • In 2002, a review of the informed consent process at the public cord blood bank of Duke University Medical Center found that "approximately one third of the respondents did not consider themselves to be in research, and almost one quarter of the respondents did not know how to contact the umbilical cord blood bank if they or their infant became seriously ill." The reviewers recommended improved parent education during the informed consent process (Ref-14)

The psycho-social impact of altruistic voluntary donation is also significant. The act of giving a new chance at life to another human being has potent moral, spiritual, and personal implications (Ref-15,Ref-16). In the case of cord blood donations which are used for medical research, it is relevent to refer to the World Medical Association's Declaration of Helsinki (Ref-17), a statement of ethical principles to which provides guidance to physicians and other participants in medical research regarding protection of human subjects. The rights of parents and children who are cord blood donors should be likewise acknowledged and respected.

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Conclusions

 

 

We ask that you join us in requesting that the Institute of Medicine National Cord Blood Stem Cell Program Committee include in its deliberations the concerns of all consumers who will participate in the planned national program. The two consumer groups are donors and recipients of cord blood. Neither group is represented by the committee membership, and representatives of donor families have not even been asked to testify. Moreover, the concerns of racial and ethnic minorities and the medically underserved from both groups of consumers must be represented before the committee. Without parents who are willing to donate their child's cord blood, there could be no national cord blood program. The best interests of donor families are as essential to the planning of this program as the medical and technical aspects of stem cell collection and transplantation.

We also remind you that your own written comments may be submitted to the committee until the end of December 2004. You may use the form on the Institute of Medicine website , or write a letter. Please be sure to send a copy of your correspondence to your elected officials in Congress, and let the Presidential candidates of your choice know your views as well.

 

 

References

[Ref.1] National Marrow Donor Program - Minority Facts & Figures
Because patients are most likely to find a compatible donor within their own ethnic group, a diverse group of potential donors is needed. As of 31Dec2002, over 4 million volunteers have joined the National Marrow Donor Program, but persons of color are in the minority. (http://www.marrow.org/NMDP/minority_facts_figures.html)

Caucasian 52.4 %
African American 8.0 %
Asian/Pacific Islander 6.5 %
Hispanic 8.5 %
Native American 1.2 %
Multi-Racial 2.2 %
Unknown 21.1 %

[Ref.2] Donor Recruitment (from the Marrow Foundation)
About 30% of patients in need of a transplant are able to find a matching donor from within their own family. (http://www.themarrowfoundation.org/DONOR/donor_idx.html)

[Ref.3] American Academy of Pediatrics, AAP Policy Document:
Cord Blood Banking for Potential Future Transplantation, dated July 1999 (http://aappolicy.aappublications.org/cgi/reprint/pediatrics;104/1/116.pdf)

[Ref.4] Royal College of Obstetricians and Gynaecologists
Umbilical Cord Blood Banking Scientific Advisory Committee, Opinion Paper 2, dated Oct. 2001 (http://www.rcog.org.uk/mainpages.asp?PageID=430)

[Ref.5] The European Group on Ethics in Science and New Technologies (EGE) ,
an independant body which advises the European Commission, has issued an Opinion (no.19) on Ethical Aspects of Umbilical Cord Blood Banking), dated 16 Mar 2004 (http://europa.eu.int/comm/european_group_ethics/docs/avis19_en.pdf)

[Ref.6] " Umbilical cord blood banking industry flourishes amid controversy"
The Detroit News 10Apr2004 health section publishes an article which points out that private cord blood banking is growing at double digit rates, by thousands of collections per year per bank, despite repeated nay-saying from transplant physicians. (http://www.detnews.com/2004/health/0404/10/health-118485.htm),

[Ref.7] International Bone Marrow Transplant Registry/ Autologous Blood and Marrow Transplant Registry ( IBMTR/ABMTR )
summary slide set on Current Use and Outcome of Blood and Marrow Transplantation 2003 (http://instruct.mcw.edu/IBMTR/BWebServer/summarysldset/summset.htm)
Slide No.7: INDICATIONS FOR BLOOD AND MARROW TRANSPLANTATION IN NORTH AMERICA 2002
The number of transplants reported in 2002 was 10,500 autologous and 7200 allogeneic (both related & unrelated).

[Ref.8] Births: Final Data for 2002
National Center for Health Statistics, National Vital Statistics Reports (http://www.cdc.gov/nchs/births.htm#Tabulated)

[Ref.9] Child Health USA 2002,
statistics compiled by The Health Resources and Services Administration's Maternal and Child Health Bureau (MCHB)

[Ref.10]
The FDA Center for Biologics Evaluation and Research (CBER) docket 21 CFR 1271 regulates cord blood under its rules for Human Cells, Tissues, and Cellular and Tissue-Based Products (HCT/Ps) (http://a257.g.akamaitech.net/7/257/2422/04nov20031500/edocket.access.gpo.gov/cfr_2001/aprqtr/pdf/21cfr1271.1.pdf)

[Ref.11] Mavin Foundation
Founded in 2001, MAVIN's MatchMaker is the only national program dedicated to mixed race bone marrow donor recruitment and education. (http://www.mavinfoundation.org)

[Ref.12] Ethical issues in umbilical cord blood banking.
JAMA. 1997 Sep 17;278(11):938-43.
Working Group on Ethical Issues in Umbilical Cord Blood Banking:
Sugarman J, Kaalund V, Kodish E, Marshall MF, Reisner EG, Wilfond BS, Wolpe PR.
(http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=9302248)

[Ref.13] Minutes of "Unrelated Allogeneic Cord Blood Banking and Transplant Forum", 14Aug2000,
Cosponsored by: Center for Biologics Evaluation & Research, FDA, and National Heart, Lung, and Blood Institute, NIH.
(http://www.fda.gov/cber/minutes/forum0814p1.htm)

[Ref.14] Optimization of informed consent for umbilical cord blood banking.
Am J Obstet Gynecol. 2002 Dec;187(6):1642-6.
Sugarman J, Kurtzberg J, Box TL, Horner RD.
(http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=12501077)

[Ref.15] Exploring the motivations of bone marrow typing donors
Journal of Psychosocial Oncology 2001; 19:49-62. Norvilitis JM, Riley TM

[Ref.16] Understanding donors' motivations: a study of unrelated bone marrow donors.
Soc Sci Med. 1997 Jul;45(1):137-47.
Switzer GE, Dew MA, Butterworth VA, Simmons RG, Schimmel M.
(http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=pubmed&dopt=Abstract&list_uids=9203278)

[Ref.17] World Medical Association Declaration of Helsinki
Ethical Principles for Medical Research Involving Human Subjects
(http://www.wma.net/e/policy/b3.htm)

Disclosure:

The authors of this petition (JR & FV) have no financial interests in or affiliation with any of the parties competing to run the National Cord Blood Stem Cell Program or any of the politicians or medical institutions that have a stake in the deliberations. We have voluntarily presented this information solely as a public service and the views expressed herein are solely our own.

Authors

Joana Ramos, MSW , social worker, lymphoma survivor, provider of Cancer Resources & Advocacy

Frances Verter, PhD , mother of Shai Verter (12/9/92 -- 9/2/97), owner and manager of the www.ParentsGuideCordBlood.com web site

Signatories

Art Flatau , leukemia survivor and editor of the Association of Cancer Online Resource Leukemia Links web site

Sandy Weber. I have CML and would like to sign the petition to keep stem cell research.

RaelS . As a health professional, I find this to be an issue of overwhelming importance, significant as well in terms of health disparities, and an individual's ability to make personal decisions about their health in confidence with their health provider.

Marilyn Kennedy , Minnesota. As a clinical social worker/professional researcher and member of a family which has been besieged with various types of carcinoma, I strongly support community and family representation--both recipients and donors--in the National Cord Blood Stem Cell Program planning process.

Sharon Glickman , Maryland, caregiver and companion to husband, Rick, NHL patient.

Steve Engel . My niece is currently in remission from a tumor diagnosed when she was 5 years old.

Margot Menefee . I have chronic myelogenous leukemia. I am signing the petition to establish a National Cord Blood Stem Cell Program as I feel there are many patients such as myself who could benefit from such a program.

Joy Elbaum, Massachusetts. I am interested in the Cord Blood Stem Cell Bank Program as a parent and an individual.

Jennifer Borman , mother of a son whose cord blood is banked at a private company; daughter of a mother who is a recipient of transplanted stem cells from an unrelated adult donor. If an adult donor had not been found, a cord blood transplant would have been recommended.

Lise Rasmussen-Wright , age 51, I am a CLL patient alive today only because of nonmyelogenous stem cell transplant, because my sister was a perfect match. I strongly support a strong cord blood program, especially with its potential to find matches among those populations who are deeply underrepresented within the Natl Bone Marrow listing; I strongly support deep involvement by donors and recipients; a gift with the potential for furthering life should appropriately acknowledge the donors, recipients, and hardworking social/administrative/clinical staff.

Misty Marchioni, Business & Development Manager, Stem Cell Laboratory, Community Blood Services, New Jersey: Being in the industry for over five years, I believe that the most important players in the cord blood industry are the donors and the recipients - they are both the backbone and the cause.

Julie Lowson, Québec, Canada, I am a CML patient. I am on 400 mg of Gleevec and everything is going well but I have a lot of interest in this subject, my three siblings are not a match so if I ever need a transplant this is the way I would wish to go.

Pat Bingham, Michigan. Cord blood saved the life of our son Isaiah (ALL-PH+) as he was not able to find a suitable bone marrow donor world-wide. -- cord blood was our ONLY option.

Terry and Jennifer King, Oklahoma. Our 5 year old son has Acute Lymphoblastic Leukemia. If he should relapse a cord blood transplant could be our only option in saving his life so our family highly supports this effort.

Nicole Tolan , Pennsylvania. I had AML diagnose in 2002, 5 months after having my first and only child. I am alive because of my sister. I had a nonmyelogenous stem cell transplant.

Becca Sanchez, Mother of John Sanchez 2/25/82-5/4/04. John had an Autogolous Stem Cell transplant and an 8/10 mismatched Unrelated stem cell for AML M0. He was going to get a multiple cord stem cell, but there was only one match. There needs to be a better donation process.

Aud Kennedy, California. I lost my nephew to luekemia and I want to support the effort to cure those with this tragic condition by supporting Umbilicord Research in the future.

Anne Bosch ,California. One of my high school graduates (I'm a teacher) passed away in May after a 2.5 year battle with Leukemia; doctors tried just about everything, I think stem cell research will help to save others.

Eileen M. Propp,California. I have mixed essential cryoglobulinemia, a rare autoimmune blood disease, and pray that umbilical research my offer a cure for myself as well as many others who are and will suffer, before we lose too many more!

Laurie Maak, California. I am completely in favor of cord blood donation. We need to help people (citizens and professionals) know more about this option and how it can become a reality. I would be interested in helping develop a large scale information-citizen engagement effort if that is desirable. I produce large-scale public policy dialogue that are web-based. I'd be please to discuss your goals and see if this means might be helpful to this important effort. My good neighbor John Sanchez recently passed away from Leukemia and tho I registered as a doner, the opportunity to save lives with cord blood offers so much more potential!

Nancy Propp, New York. This program is crucial to progress medicine and provide new possibilities to millions of people afflicted with various illnesses.

Ann Fonfa , breast cancer survivor, founder and President of The Annie Appleseed Project , Florida. I am the founder of The Annie Appleseed Project, providing information, education, advocacy and awareness for people with cancer. We strongly support cord blood studies.

Barbara Quein, California. My friend's son lost a two year battle with leukemia, dying in his early 20s.

Jackie Corso. I have Mantle Cell Lymphoma and someday I will need a stem cell transplant.

Rick Propp, California. My wife has an autoimmune disease.

Sybil Whitman, Canada. I am a 48-year-old woman diagnosed with aggressive non-Hodgkins lymphoma in October 2003 and I have no matched related bone marrow donor.

Judith S. Jacobson, DrPH, MBA, Department of Epidemiology, Columbia University, New York: I am an epidemiologist studying cancer and asthma.

Ruth Ehrlich , mother of Nathan Ehrlich who was diagnosed with AML at age 16 in May 2000; had matched sibling transplant; just got off all gvh meds after 4 years; some lingering issues but alive and well and almost a senior in college.

Cristina Ramírez , México, I am a philosopher concern about bioethics and justice.

Cheryl Frasca I support the "Institute of Medicine National Cord Blood Stem Cell Bank Program." I believe this will help to save lives or at least help those who suffer from disease to have a better quality of life. I am a registered voter that actually votes and am a catholic republican. I believe this program is inline with my political and religious beliefs.

Bill Henderson I am the author of the book "Cure Your Cancer" and 66 biweekly newsletters on the same subject. I know stem cell research will someday help the cancer patients I hear from daily.

Molly H. from Nashville, Tennessee. Hi, a wonderful family member sent this info to me and I would like to sign the petion. I support cord blood donation and think that if it can help save lives, we need to be doing everything possible to achieve that. Thank you.

Pat Hanlon Research and testing always benefits those who come behind us

Jay F. Brasseur Living in New York City, I am currently in remission from AML, having undergone treatment and chemotherapy last year. I am also involved with the International Cord Blood Society with, obviously, a vested interest in seeing a National Cord Blood Stem Cell Program established.

Tom Magoto, Jr. , Ohio. My daughter has Type I diabetes.

Peggy Badran, LSW, Maine resident. Breast cancer survivor and social worker with pediatric oncology/hematology. This is a wonderful initiative that would benefit so many. Thank you.

Elizabeth Plummer , Santa Cruz, CA. Stem cell donor, soon to be mother, friend and family of cancer survivors, spinal cord injury and non surviving cancer friends. I would hope that my child and I would be able to donate on our cord stem cells just as easy as giving blood. A National Cord Blood Stem Cell Program or registry is as needed as a blood bank.

Lori Burris , US. I am pregnant and do not live close to any Public Cord Blood Bank as there are only 13 states listed that currently have Public Donation Banks, WHY does America not see what a waste this is? Someone somwhere could possibly be saved with my baby's cord blood, but we will never know.

Jon Pinney , Indiana. I lost my first daughter to leukemia and could not bank the cord blood from my second daughter. I want a bank in Indiana and am willing to put forth the effort to make sure it happens.

Michael Krulee , San Jose California. My wife is pregnant with our second child and we are going to bank the chord blood (I wish we knew about this at the birth of our first child!). National program is desperately needed so that these services, benefits and information are available to all that require it. I am also hoping that having a National program will aid in the number of donations received.

Join us

To join this petition, send an Email to Dr. Frances Verter with the subject line "joining petition". Please give your name, the US state or international country where you live, and a one-line description of your involvement or interest in this topic. For persons signing on behalf of an entire organization, whether it is a non-profit charity or a for-profit company, in the case of an entire organization I am willing to post a thumbnail image of your logo.

Signatories will be added on a first-come, first-served, basis.

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Copyright 2004 Joana Ramos & Frances Verter

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