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1.: # 402 Friday, December 28, 2007 - WHEELCHAIR WARRIOR CHALLENGES PRES From: Stephen Meyer

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1.: # 402 Friday, December 28, 2007 - WHEELCHAIR WARRIOR CHALLENGES PRES

Posted by: "Stephen Meyer" meyer74@bellsouth.net stephen_meyer_stemcells

Mon Dec 31, 2007 7:33 am (PST)

# 402 Friday, December 28, 2007
<file:///C:/My%20Webs/myweb11/Archive%20322%20Monday,%20April%2020,%2020\
07%20-%20FLORIDA%20ONCE%20MORE%20PIVOTAL%20TO%20NATIONâ€™S%20FUTURE\
.htm> - WHEELCHAIR WARRIOR CHALLENGES PRESIDENTIAL CONTENDER

First, the dynamite.

"We at Wired Science think that people suffering from these 73
conditions would love to know where they can receive these cord blood
and adult stem-cell treatments. So to (Presidential contender Fred)
Thompson, we issue a challenge: Provide a list of locations where
Americans can receive these treatments." Steven Edwards.

--(Wired Science Issues Stem-Cell Challenge to Fred Thompson, by Steven
Edwards, November 26, 2007)

A little background: wheelchair warrior Steven Edwards of South Carolina
is a friend of research from way back. Computer-savvy from the git-go,
he helped spread the message about the Roman Reed Spinal Cord Injury
Research Act of 1999. I think he was about 19 years old at the time,
which was a shock to me, that he could navigate the electronic world so
effortlessly.

After Roman's law was signed, I lost track of him for a while. We
went different ways, only occasionally bumping into each other at events
like Unite2Fight Paralysis (where I received a second surprise: that he
has red hair bright enough to start fires with).

He became a writer for WIRED, the famous internet organization, and
routinely produces quality work. Sometimes we agreed, sometimes we
disagreed.

His long term goals include lobbying for increased NIH funding, anybody
got any tips, pointers, or contacts for him?

But nothing prepared me for what came next.

Remember the famous list of 73 adult stem cell "treatments"?
Invented by Family Research Council employee Dr. David Prentice, this
list has been used as ammunition by every Religious Right congressman
and Senator who ever wanted to attack embryonic stem cell research. (To
understand the huge impact of the Prentice list, the Congressional
debate on the Stem Cell Research Enhancement Act is instructive: the
list is mentioned, I believe, by every opponent of the research.)

That is a problem, because the list is bogus.

It is what I call a "lawyer's lie", where the facts
themselves may not be inaccurate, but the planned impact is utterly
false.

A lawyer could probably find ways to talk about the list with a straight
face, because technically a treatment is undoubtedly available for every
disease on earth, you could give aspirin for cancer and call it a
treatment.

But the implication?

To imply there is no need for embryonic stem cells because adult stem
cells are all we need, when one hundred million Americans suffer chronic
disease and disabilities?

Among the conditions which the Prentice list claims as having an adult
stem cell treatment is spinal cord injury paralysis: which affects my
son.

Now, if there is a cure for paralysis, I am reasonably certain I would
know about it. There isn't one; that is why we fight, so the
research can go forward.

As far as the alleged "treatments", I have heard all the babble
about OEG's, (Olfactory Ensheathing Glia) etc., and don't buy
it, because I have talked to several people who have actually had the
operation. None are doing well enough for me to recommend a similar
procedure for my son. That is my standard; would I want my son to have
the treatment?

One person says he can now feel skin sensation on his elbow, feel the
shirt sliding on when he is being dressed in the morning. But he is
still paralyzed.

I would not send my worst enemy to have his or her spine opened up for
the insertion of cells from deep inside their nose, (where OEG's
come from) not only because I see no real evidence that it helps, but
also because things can get worse. Imagine being paralyzed, and then
having a treatment-- which resulted in continual pain for the rest of
your life, paralysis AND pain?

I have no problem with adult stem cells (or OEG's: there is
disagreement if adult stem cells are even present in the OEG's);
science only goes forward when freedom of research is allowed.

I support full stem cell research, adult, embryonic, nuclear transfer,
and the new reprogramming methods, but none at the exclusion of the
others.

I won't accept a substitute for an entire field of science, and
that, unfortunately, is what the opposition to ESCR suggest.

For them, it is adult stem cells and nothing else.

So when Republican presidential contender Fred Thompson made the
following statement, (about the iPS experiments) I just shook my head in
frustration.

"In yet another breakthrough for adult cell research, scientists
have made normal human skin cells take on the relevant properties of
embryonic stem cells. That is in addition to 73 breakthroughs for adult
and cord blood research, just one more indication that our current
policy in relying only on adult cells is working." (emphasis added).

Politely, but publicly, Steven Edwards stepped up to the plate.

First he inquired if the 73 breakthroughs mentioned by candidate
Thompson did in fact refer to the Prentice List. When told that it was,
he wrote the following:

"We at Wired Science think that people suffering from these 73
conditions would love to know where they can receive these cord blood
and adult stem-cell treatments. So to (Presidential contender Fred)
Thompson, we issue a challenge: Provide a list of locations where
Americans can receive these treatments." (emphasis added, dr)

Brilliant. If there are all these treatments available, where can we get
them?

At first, there was no response. But Steve kept after them, and finally
the campaign spokesman responded, with what I consider pure fast-talk
and evasion.

The following is taken from the web.

(Wired Science has no connections to me or my opinions; I just liked
what I found and am printing it below; if that bothers them, I will
retract it.)

"Fred Thompson's Campaign Responds to Stem-Cell Challenge

By Steven Edwards November 28, 2007 | 3:13:46 PMCategories: 2008
Presidential Election
<http://blog.wired.com/wiredscience/2008_presidential_election/index.htm\
l> , Stem Cell Research
<http://blog.wired.com/wiredscience/stem_cell_research/index.html>

Fred Thompson's campaign responded to our challenge
<http://blog.wired.com/wiredscience/2007/11/wired-science-i.html> to
provide a list of locations where Americans could receive cord blood or
adult stem-cell treatments for the 73 conditions
<http://stemcellresearch.org/facts/treatments.htm> he referenced last
week.

In case you're just joining us, in response to the breakthrough
<http://www.wired.com/medtech/stemcells/news/2007/11/skin_cell> last
week in which scientists converted skin cells into stem cells, Fred
Thompson praised adult stem cell research and cited what I believe is an
inaccurate and politicized list of 73 adult stem cell treatments
<http://stemcellresearch.org/facts/treatments.htm> that conservative
pundit David Prentice has compiled on his web site.

In his most recent response, David Ng, a spokesman for Thompson seems to
be backpedaling. He said the presidential candidate had characterized
the list as "research," not treatments, which is true. But I had
followed up with Ng last week to clarify whether Thompson was actually
referring to Prentice's list of "treatments." Ng said yes. So, it seems
clear that Thompson was saying there are 73 adult stem cell treatments,
and I wanted to know where people could get them. Ng continued to dodge
the question. His full response is after the jump.

Sen. Thompson's statement praises another scientific breakthrough last
week where adult skin cells were manipulated to take on the properties
of embryonic stem cells. It referenced additional scientific
breakthroughs in adult stem cell and cord blood research. There are 73
scientific breakthroughs (we never said cures) for non-embryonic stem
cell research, and none for embryo destructive research.

THE BOTTOM LINE IS THIS: We should use our limited research dollars in
a manner that is most promising.

But in reference to your challenge, nowhere does the statement address
the issue of where people suffering from these diseases can be treated.
The statement only references the research that is occurring. The
senator was not trying to refer patients to specific treatment centers
but instead to refer reporters to the studies.

I reminded Ng that he had already confirmed that Thompson was referring
to Prentice's list of "treatments," and that asking where people could
get them seemed to be the logical follow-up. (Am I wrong?)

Steven Edwards: The challenge was issued because of repeated references
to the 73 treatments over the years by multiple parties. The statements
were a reference to Prentice's treatments for 73 conditions, as you
indicated.

If the treatments exist, they will be available somewhere in some form,
so I am just asking for a list of where Americans can receive these
treatments. It seems to be a logical follow-up question to the
statements made by Senator Thompson, and one that I know many people
suffering from the 73 conditions have. (I personally have no movement
below my shoulders and use a ventilator to breath for me at night due to
a 1996 spinal cord injury, suffered at the age of 16.)

I understand his statement does not address where people can receive
these treatments, but that's the purpose of the challenge. If the
treatments exist, where can we get them? If they don't exist,
perpetuating the myth that they do is unkind at best.

Darrel Ng: The statement speaks about research. You ask about
treatments. I don't think it's fair to make that jump. Research always
precedes treatment. (That would be akin to the campaign issuing a
statement about the success a certain type of alternative vehicle fuel
research and encouraging future research in that area, and you asking
where can people go and purchase these new cars.)

I hope that helps clarify our point of view.

It didn't.

Our final exchange went a little something like this:

Steven Edwards: The source for Senator Thompson's "73 breakthroughs"
statement was the list of 73 cord blood and adult stem cell treatments
at www.stemcellresearch.org <http://www.stemcellresearch.org/> , but
your response below says the statement was about research instead of
treatments.

Does this mean Senator Thompson does not believe that the 73 treatments
listed at www.stemcellresearch.org <http://www.stemcellresearch.org/>
exist?

Darrel Ng: You're missing the whole point of this. The point is that the
Senator supports the use of limited science dollars in the way that
looks to bring the greatest return.

I'm not sure why you're bringing us into the debate over the list. If
you have issues with the list, that's something I'm sure you can and
will discuss on your blog. What we said in reference to the research.

Steven Edwards: It's about accountability.

Senator Thompson praised the iPS work and referenced the list to back
his opinion that cord blood and adult stem cell research are the most
promising avenue to invest in going forward. His opinion may be imposed
on Americans who hold other views if he wins the election, so it's
important to ensure that his opinion can be backed by facts.

If the facts support his opinion, so be it. If the facts don't,
hopefully Senator Thompson will realize that and modify his position to
one that is more in line with the facts.

By that, I don't mean he should start supporting research he opposes on
moral grounds, but perhaps suggest policies that would enable more
people to access the treatments on the list. If the treatments do not
yet exist in a form that is available to Americans, acknowledge the fact
and suggest policies to help speed their development so that Americans
can benefit.

Using your earlier analogy on alternative vehicle fuels, if your
supporting documents suggest that the fuels are already available for
purchase and use, you shouldn't be surprised if someone asks where they
can be obtained.

Is simple accountability too much to ask from a presidential candidate?

Editor's note: this post has been edited.

Don Reed
www.stemcellbattles.com <http://www.stemcellbattles.com/>

Don C. Reed is co-chair (with Karen Miner) of Californians for Cures,
and writes for their web blog, www.stemcellbattles.com
<http://www.stemcellbattles.com/> . Reed was citizen-sponsor for
California's Roman Reed Spinal Cord Injury Research Act of 1999,
named after his paralyzed son; he worked as a grassroots advocate for
California's Senator Deborah Ortiz's three stem cell regulatory
laws, served as an executive board member for Proposition 71, the
California Stem Cells for Research and Cures Act, and is director of
policy outreach for Americans for Cures. The retired schoolteacher is
the author of five books and thirty magazine articles, and has received
the National Press Award.

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