Phil and others,

I have wanted to put my 2 cents in this but have been busy.  I have a
lot to say about this kind of surgery having been a participant.  I
strongly support the concept and perhaps I will get a chance to write
more late.  I have written an article for the upcoming PDF newsletter
which touches on it.  But I do want to comment on your issues Phil.

I think that the ethics of purposely doing a surgical procedure on a
patient and putting them at risk without the benefit of that accruing to
someone is questionable.  In the case of the double blind placebo trials
while the benefit to the "sham" surgery recipients were as great if the
treatment group did not improve in quality of life and improvement of
symptoms than the placebo group then the study would indicate that fetal
cell transplants (at least done according to that protocol) are not
worth the risk of injecting foreign cells into one's brain.  The fact
that the cells grow and develop connections is important scientifically
but means nothing therapeutically. The reason these studies were done is
to establish this one way or another. The value is to protect patients
from  risk.   The placebo effect is a byproduct. In clinical medicine it
should be utilized in the interest of the patient but not in a way that
increases risk.  The little risk incurred as being a placebo patient in
the study is knowingly undertaken to either prove that the surgery has
value or prevent unnecessary procedures from being done in the future.

 I also think Kaplan- the Univ of Pa medical ethicist while getting a
lot of TV coverage in his opposition to "sham surgery" is dead wrong and
is disrespectful of our ability as patients to make an informed decision
as to whether we participate

I have written much that I am not putting in this post but when the
issue comes up again- and I am sure it will I have a lot more to say.

Personally,  surgery (DBS- STN)  is Tuesday May 18. (with the real thing
guaranteed).  From the posts on the list it looks like I will be joining
a growing "club".  Thanks especially to Jane Ross and the other pioneers
who participated in the early studies in DBS.  Also thanks for all the
good wishes I have gotten from so many of you during the past couple of
weeks.

I'll try and keep you informed,  of my progress (I hope!)

Charlie

Phil Tompkins wrote:

> I have a question about why placebo surgery is done for tissue
> transplants.  I think there is something odd about the reasoning
> that is supposed to justify it.
>
> In the 20/20 TV program on PD transplant surgery, Dr. Timothy Johnson
> noted that "drug studies have already proved that patients with
> Parkinson's are very responsive to the placebo effect", apparently
> implying that the placebo effect is less in most other diseases.
>
> It would be useful to determine precisely why this is so.  Perhaps
> having a progressively deteriorating condition for which there is no
> cure is itself the source of a nocebo (negative placebo) effect.  If
> the baseline is negative to begin with, then of course the placebo
> effect would be greater.  However, this is not my main point.
>
> In his next sentence, Dr. Johnson indicates that the great
> responsiveness of PWPs to the placebo effect is the reason for the
> placebo surgery.  "So to avoid the possibility that the experimental
> surgery was simply causing a placebo effect, the doctors insisted
> that their new study compare real surgery with implants against fake
> surgery with no implants."
>
> I do not see how Dr. Johnson's statements justify placebo surgery for
> tissue transplants.  The purpose of the tissue transplants is to
> replace those cells which are missing due to the disease, so as to
> re-introduce the function which the missing cells had.  The success
> of the surgery ought to be measured by whether or not this purpose
> was achieved.  Hugh Downs noted, "new cell growth has been seen only
> in patients who got the actual cells."  How could it be otherwise?
> How could one expect tissue growth from tissue which has not been
> implanted?  How, then, can placebo "non-transplant" surgery indicate
> whether or not the real transplants were successful?
>
> Phil Tompkins
> Hoboken NJ
> age 61/dx 1990

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Charles T. Meyer,  M.D.
Middleton (Madison), Wisconsin
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