Dear Tom,
Dr. Steven L. Teitelbaum, a professor at Washington University School of Medicine, recently said
at a lecture, the public is being "inundated with misinformation ... and outrageous non-facts" about
embryonic stem cell research. While I realize it is your hope to set the record straight, as is so
often the case in emotional issues, statements are taken out of context or turned to reflect one
opinion or another. I would suggest you do some more research to set the record straight.
While you are correct in that there is not a total ban on stem cell research, the few lines that
are left are contaminated with mouse cells and are not safe for use in people. The Food and Drug
Administration is concerned that the animal cells could pass harmful viruses or other
disease-causing agents. This is tying the hands of the scientists trying to work with them. If you
are really pro-embryonic research, then I don't understand how you can be "comfortable" with the
situation as it is today.
You mention that the research is flourishing at Universities, and yet they depend upon government
grants in order to do basic research, and don't you think the government should have oversight on
something so important?
You mention that adult stem cells have brought us treatments and embryonic stem cells have
yielded none. You have been swayed by those who are opposed to our government funding more ESC
research. Are you aware that 40 years of adult stem cell research have proven their value for
treatment of only a limited number of specific conditions and diseases over the last 20 years? Are
you aware that embryonic stem cells were only discovered in 1998?
Although few experiments with humans have been done yet, apparently you are unaware that there
have been a multitude of results from embryonic stem cells in animals... such as the production of
heart muscle cells, treatment of loss of vision, replacement of dopamine cells for Parkinson's
Disease, some of which are listed on the NIH website http://stemcells.nih.gov/research/highlights/
but the list already goes on and on...brain cancer, cystic fibrosis, diabetes, etc.
The Boston Globe reported today that the most impressive and often-cited example of adult stem
cell experiments that were supposed to replace embryonic cells are surrounded by questions because,
two years later, other scientists have not been able to replicate the work. The scientist who did
that work, Dr. Catherine Verfaillie of the University of Minnesota, said she has not found a
replacement for embryonic stem cells and is frustrated with the increasing politicization of the
issue. She said, ''My research is being misused depending on the point someone wants to get across.
They have put words in my mouth."
Dr. Irving Weissman of Stanford University, one of the founding fathers of stem-cell science and
cofounder of two companies who works with adult stem cells said, ''everywhere we have looked, [the
claims] just fell apart."
With regard to the President's Council on Bioethics...before the report was issued in January,
there were tense fights among council members over how to present the differences between adult and
embryonic stem cells according to Elizabeth H. Blackburn, a prominent cell biologist who was later
fired from the council. She said the report's treatment of the science seemed confusing by design,
and treated well-established facts about embryonic stem cells on an equal footing with Verfaillie's
research and other less substantiated, and even more controversial, claims. She said many of her
suggestions to clarify the text were ignored.
You also spoke about Dr. Michel Levesque's research. Does this information come from the ad that
the United States Conference of Catholic Bishops launched nationwide declaring that ''adult stem
cells have helped thousands of people, including patients with Parkinson's disease, spinal cord
injury, sickle-cell anemia, heart damage and many other conditions."
If so, you need to know that the scientists interviewed said this statement is misleading because
it implies that adult stem cells are proven treatments for all of these conditions. Dr. Jeffrey D.
Macklis, an adult stem cell researcher who is the director of the Massachusetts General
Hospital-Harvard Medical School Center for Nervous System Repair said initial studies in humans have
shown some promise with using bone marrow to treat the heart and its circulation. But, while there
is potential for the future, there have been no published, controlled human studies showing bone
marrow or any adult stem cell can help with Parkinson's, spinal cord injury, or any other
neurological disorders.
Perhaps you believe Richard Doerflinger, deputy director of the Secretariat for Pro-Life
Activities at the US Conference of Catholic Bishops, who said the ad is not misleading and refers to
one Parkinson's patient treated in California and a limited number of spinal cord injury patients
treated in Portugal. Yet, Dr. Michel Levesque, the neurosurgeon based at the Cedars-Sinai Medical
Center in Los Angeles who treated the Parkinson's patient referred to by Doerflinger, said that
though his solitary patient has improved, the ad is misleading because he is only now putting
together a comprehensive study of the procedure and has not proven it is an effective treatment.
As Dr. Irving Weissman of Stanford University, one of the founding fathers of stem-cell science
said in his testimony at a hearing, "We should remember that high quality research takes time, and
we must not overestimate how quickly the work will go. But if we don't start, we'll never get
there."
I could go on and on but it is too late. You are representing all of us...please make sure you
know the real facts.
Nina Brown (19 years of PD)
"Circumstances determine our lives, but we shape
our lives by what we make of our circumstances."
Sir John Wheeler Bennett, a British historian
> -----Original Message-----
> From: Parkinson's Information Exchange Network [mailto:[log in to unmask]] On
> Behalf Of Murray Charters
> Sent: Sunday, October 31, 2004 11:55 PM
> To: [log in to unmask]
> Subject: Celebrities Mislead & Confuse The Stem Cell Issue
>
> Celebrities Mislead & Confuse The Stem Cell Issue
> Embryonic and adult stem cells. The media, celebs, and politics are
> misleading the public.
>
> Distribution Source : PRWeb
>
> Date : Sunday - October 31, 2004
>
> (PRWEB) October 31, 2004 -- Like Michael J Fox I am a young onset
> Parkinson's disease patient, one of thousands in the United States.
> However I do not have the star power to influence voters.
>
> I was diagnosed four years ago at the age of 33 while serving in the
> US Air Force. The disease ended my marriage and my carreer but also
> gave me new direction in life. My days are like a roller coaster ride
> as medication swings me back and forth between "on" and "off" stages.
> I work full time now for the Department of Energy as a computer
> specialist, which is no easy task, but I fight my way through each
> and every day determined not to lose the battle.
>
> With the pending election the topic of stem cells has found itself
> pushed into the spotlight. This is both good and bad. Good for the
> awareness and bad for the misleading statements, articles, and other
> media released on the subject. It is my hope that this article will
> help set the record straight.
>
> There is no total restriction on stem cell research in the United
> States. The restrictions imposed are for "embryonic stem cell
> research" and the policy restricts utilizing federal funds (tax
> dollars) for embryonic stem cell research, it does not ban all stem
> cell research as the public is often lead to believe. Researchers in
> the United States are free to use pre-existing lines using federal
> money and new lines using private funding to pursue embryonic stem
> cell research. Embryonic stem cell research in fact is flourishing at
> Universities as well as through private grants across the United
> States. Not to mention the work being accomplished worldwide.
> Adult stem cells have brought us treatments and cures for over 140
> conditions. Embryonic stem cells have yielded none. The policy
> imposed by President Bush is a fair policy and it is working. Yes it
> was made using values and ethics, but those are two values that this
> country is supposed to represent.
>
> Unfortunately celebrities fall prey to the pressures of politics.
> Displaying public support for a candidate, making unfair and
> unresearched statements about current stem cell policies, and
> creating misleading stem cell commercials is not the answer. We must
> educate the public on the issues and get away from the politics.
>
> Embryonic stem cells (source: NIH)
>
> Embryonic stem cells, as their name suggests, are derived from
> embryos. Specifically, embryonic stem cells are derived from embryos
> that develop from eggs that have been fertilized in vitro-in an in
> vitro fertilization clinic-and then donated for research purposes
> with informed consent of the donors. They are not derived from eggs
> fertilized in a woman's body. The embryos from which human embryonic
> stem cells are derived are typically four or five days old and are a
> hollow microscopic ball of cells called the blastocyst.
>
> Adult Stem Cells (source: NIH)
>
> An adult stem cell is an undifferentiated cell found among
> differentiated cells in a tissue or organ, can renew itself, and can
> differentiate to yield the major specialized cell types of the tissue
> or organ. The primary roles of adult stem cells in a living organism
> are to maintain and repair the tissue in which they are found. Some
> scientists now use the term somatic stem cell instead of adult stem
> cell. Unlike embryonic stem cells, which are defined by their origin
> (the inner cell mass of the blastocyst), the origin of adult stem
> cells in mature tissues is unknown.
>
> While I am for embryonic stem cell research (excluding the fetal
> tissue stem cells they avoid talking about) I am very happy with the
> current policy. It would be morally wrong for our government to use
> tax payers money to do research on embryos from IVF clinics or other
> sources.
>
> The study of embryonic stem cells is important.and should continue.
> We do not need to rely on federal funds. In 2003 an estimated $120
> million of private funds was given to various researchers and
> universities to pursue embryonic research.
>
> Researchers recently revealed research in which adult stem cells have
> been converted to long-lasting, dopamine-producing brain cells that
> could eventually be used to treat diseases such as Parkinson's. Dr
> Michel Levesque of Cedars Sinai has also shown the potential of adult
> stem cells for Parkinson"s disease.
>
> So What Is The Truth?
>
> The report "Monitoring Stem Cell Research" by The President's Council
> on Bioethics released in January 2004 does a great job of separating
> the fact from fiction in regards to current policy regarding stem
> cell research in the United States. This report can be viewed in its
> entirety at: http://www.bioethics.gov/reports/stemcell/fulldoc.html
>
> Here are a few of the facts that the report brings to light:
>
> .This law effectively prohibits the use of federal funds to support
> any research that destroys human embryos or puts them at serious risk
> of destruction. It does not, however, prohibit the conduct of such
> research using private funding. Thus, it addresses itself not to what
> may or may not be lawfully done, but only to what may or may not be
> supported by taxpayer dollars. At the federal level, research that
> involves the destruction of embryos is neither prohibited nor
> supported and encouraged.
>
> .Scientists may receive federal funding for using or deriving new
> animal embryonic stem cell lines, to assess the potential of these
> cells for treatment of animal models of human disease.
>
> .Researchers can use federal funds for work involving human embryonic
> germ cells, obtained from aborted fetuses.
>
> .Researchers can receive federal funds for work conducted on human
> adult (non-embryonic) stem cells.
>
> .There are no restrictions regarding what American scientists can do
> with regard to adult stem cells using taxpayer funds, other than
> those requiring them to honor the usual human subject protections and
> clinical research requirements (if they are to be transplanted into
> human patients). The NIH has devoted substantial resources to the
> study of human adult stem cells, allocating over $170 million to the
> field in fiscal year 2002, and approximately $181.5 million in fiscal
> year 2003 (approximately ten times the amount devoted to human
> embryonic stem cell work).
>
> .Researchers remain free to pursue work (including the derivation of
> new lines of embryonic stem cells) in the private sector, without
> government funding.
>
> .Under present law, work supported by private funds can proceed
> without restriction.
>
> Stem cells, embryonic or adult, can possibly one day cure Parkinson's
> and many other diseases. Being very much pro-embryonic stem cell
> research I can see both sides of the coin on this complex issue and
> am very comfortable with the decision made by President Bush.
>
> Thomas N. Berdine
> Albuquerque, NM
> http://www.youngparkinsons.com
>
> # # #
>
> http://www.YoungParkinsons.com
> Thomas Berdine
> 505-293-5612
> E-mail Information
> http://www.prweb.com/emailmember.php?prid=173517
>
> SOURCE: PRWeb / Arrive.net Top Stories, Oct 31, 2004
> http://press.arrivenet.com/pol/article.php/494681.html
>
> Comment:
>
> Tom, at your youthful age, given the longevity of Parkinson's, you
> may have the requisite 30 years to wait this out...
>
> Others, like myself, have already endured more than 20 years and for
> us time is definitely of the essence!
>
> cheers ... murray
>
> PS: Feel free to lambaste or embrace Tom's position...
>
> * * *
> Murray Charters <[log in to unmask]>
> Please place this address in your address book
> Please purge all others
>
> Web site: Parkinsons Resources on the WWWeb
> http://www.geocities.com/murraycharters
>
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