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		LISTSERV Archives
		PARKINSN Home
		PARKINSN January 1997, Week 1
Subject:
Re: fetal transplant surgery.
From:
"Charles T. Meyer" <[log in to unmask]>
Reply-To:
PARKINSN: Parkinson's Disease - Information Exchange Network
Date:
Wed, 1 Jan 1997 17:59:57 -0500
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to Ed Ashley

I did not get the full story regarding your experience with the
Columbia-Presbyterian- Colorado double blind study.  I am a participant
in a very similar study involving the University of South Florida in
Tampa,  Rush-Presbyterian in Chicago and Mt. Sinai in New York.  It was
made clear to me that I would not know what group I was in for up to 4
years post surgery.  I am now 9 months post surgery.  I was told that I
would be cared for using standard non-surgical techniques for that time
period and if I had the placebo surgery (which involves drilling the
holes in the skull but not actually entering the brain) I would receive
the actual surgery when the code was broken.  The only way I would know
sooner was if I developed a serious complication which endangered my
well-being .
This procedure is absolutely necessary to establish the efficacy and
risk of this controversial procedure.  We have benefitted from what was
learned by those brave individuals who underwent the surgery in its
early stages when nobody knew for sure what would happen.  The risk we
have taken is much less.  We know that the complication rate is rather
small and that there are indications that PD can be helped.  But that
has not been proven.  The history of medicine is filled with "promising"
procedures and treatments which turned out to do more harm than good.
We in exchange for free surgery and a large dose of HOPE agreed to go
through the agonizing uncertainty that you describe.  So many factors
influence the ebb and flow of our symptoms that neither we as patients
nor the clinicians that treat us and who desperately want to find a cure
can be trusted to maintain our objectivity.  The only way we can be sure
that we have a procedure that provides sufficient benefit to justify the
risk (and cost) is the double blind studies.  From the practical
standpoint- if we want this procedure to become standard and get
insurance companies to pay for it in spite of the tremendous political
pressure that will be exerted against them because of the abortion issue
the data has to be iron clad.
I urge you- if you feel that you have been deceived to contact the human
subjects committee at Dr. Fahn's hospital.  If he has violated the
stringent ethical guidelines for this study they will deal with it.
But,  if the issue is primarily the agony of the uncertainty,  well all
agreed to put up with it and if you "go public" with a charge against
the transplant study you will be almost certainly seriously damaging not
just the study but the hopes of the 1 million of us with PD in this
country not to mention the rest of the world.
I would be interested in hearing what you feel has been done that you
feel is improper.  I am a physician as well as a PD patient and a study
participant.  Maybe I can help bridge the gap here.
--
**********************************************************
CHARLES T. MEYER, M.D.
MADISON, WISCONSIN
[log in to unmask]
**********************************************************


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<DT>to Ed Ashley</DT>

<DT>&nbsp;</DT>

<DT>I did not get the full story regarding your experience with the Columbia-Presbyterian-
Colorado double blind study.&nbsp; I am a participant in a very similar
study involving the University of South Florida in Tampa,&nbsp; Rush-Presbyterian
in Chicago and Mt. Sinai in New York.&nbsp; It was made clear to me that
I would not know what group I was in for up to 4 years post surgery.&nbsp;
I am now 9 months post surgery.&nbsp; I was told that I would be cared
for using standard non-surgical techniques for that time period and if
I had the placebo surgery (which involves drilling the holes in the skull
but not actually entering the brain) I would receive the actual surgery
when the code was broken.&nbsp; The only way I would know sooner was if
I developed a serious complication which endangered my well-being .&nbsp;&nbsp;</DT>

<DT>This procedure is absolutely necessary to establish the efficacy and
risk of this controversial procedure.&nbsp; We have benefitted from what
was learned by those brave individuals who underwent the surgery in its
early stages when nobody knew for sure what would happen.&nbsp; The risk
we have taken is much less.&nbsp; We know that the complication rate is
rather small and that there are indications that PD can be helped.&nbsp;
But that has not been proven.&nbsp; The history of medicine is filled with
&quot;promising&quot; procedures and treatments which turned out to do
more harm than good.&nbsp; We in exchange for free surgery and a large
dose of HOPE agreed to go through the agonizing uncertainty that you describe.&nbsp;
So many factors influence the ebb and flow of our symptoms that neither
we as patients nor the clinicians that treat us and who desperately want
to find a cure can be trusted to maintain our objectivity.&nbsp; The only
way we can be sure that we have a procedure that provides sufficient benefit
to justify the risk (and cost) is the double blind studies.&nbsp; From
the practical standpoint- if we want this procedure to become standard
and get insurance companies to pay for it in spite of the tremendous political
pressure that will be exerted against them because of the abortion issue
the data has to be iron clad.&nbsp;&nbsp;</DT>

<DT>I urge you- if you feel that you have been deceived to contact the
human subjects committee at Dr. Fahn's hospital.&nbsp; If he has violated
the stringent ethical guidelines for this study they will deal with it.&nbsp;
But,&nbsp; if the issue is primarily the agony of the uncertainty,&nbsp;
well all agreed to put up with it and if you &quot;go public&quot; with
a charge against the transplant study you will be almost certainly seriously
damaging not just the study but the hopes of the 1 million of us with PD
in this country not to mention the rest of the world.&nbsp;&nbsp;</DT>

<DT>I would be interested in hearing what you feel has been done that you
feel is improper.&nbsp; I am a physician as well as a PD patient and a
study participant.&nbsp; Maybe I can help bridge the gap here.&nbsp;&nbsp;<BR>
--&nbsp;<BR>
**********************************************************<BR>
CHARLES T. MEYER, M.D.<BR>
MADISON, WISCONSIN<BR>
[log in to unmask]<BR>
**********************************************************<BR>
&nbsp;</DT>

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