Washington PAN Reflections II
June 17-20, 1996

Scaling the Hill this time was different. In May we seemed to have an
air of military precision about us. This time it was more like a
gathering of enthusiastic artists who had come together to witness the
unveiling of a magnificently crafted piece of genius. This time it was
like a gathering of musicians who came to be a part of a great
symphonic performance lead by several renown conductors.

What made this performance beautiful was that  several conductors lead
their piece and then sat down in the orchestra and played the music
selected by the other conductors. There were only two planned events
both in the basement of the Capital Building. Thank you Jim Cordy, and
Joan Samuelson for organizing and sharing your stirring words with us.
The unscheduled evening events were wildly successful. Monday night at
the Holiday Inn Capital, Tuesday we split and went to a couple of
different restaurants and Wednesday we  ate at  Union Station.

 Monday nearly 40 people attended PAN, APDA and NPF were well
represented. More than half were first timers. Thanks Terry Whitling
for setting that up. It was apparent from this group of Parkinsonians
and caregivers that something special was about to happen. I had an
opportunity to sit next to Don Bern of Loma Linda Pallidotomy fame. He
has been an advocate for this procedure and over the course of three
days I must say I understand why. His only visible PD symptom is that
his movements are just a tad slower than I would have expected from his
imposing 6' 4" frame.

Tuesday morning I paired off with Fred Green of the Dallas APDA and
Bill Thorson a New York APDA chapter President. The three of us spent
all day Tuesday covering Texas, both Senators and seven congressmen.
This being my third trip and the first for both of them I naturally
assumed the lead in the early visits but by mid afternoon I felt like I
had two skilled veterans with me. Fred lost his wife to PD
complications 5 years ago, Bill was the beneficiary of a unilateral
pallidotomy at Emory and I am a caregiver of 21 years. What a team!

The most memorable of these visits was the one with Senator Hutchison's
aide. You may recall this was my third visit to this office. It was
unlike any I had previously experienced. A fellow Texan had written to
the Senator and included my Pan Reflections from our May visit as part
of his petition for support for the Udall bill. That document captured
my expression of discomfort from that and prior meetings with this
Senators office. Wow, what an impact those writings had. This tme we
met in a private conference room. It probably would not be appropriate
to report the flow of this conversation other than to say that the
meeting was very emotional, shorter than prior meetings, tears flowed
on both sides of the table and a higher richer form of communication
occurred than in our previous meetings. We will have a response by
Tuesday. I pray that it will be a new cosponsor for the Udall bill.

Another memorable event was with the Legislative Director from New
Jersey Congressman Chris Smith's office. I asked the congressman to
withdraw HR 3514 and the ban on the use of aborted fetal tissue and to
sign on to HR 1462. Fred Green and I had over forty-five minutes to
review our objections

The aide said that the congressman believes that abortion is unethical
except (ectopic and spontaneous) and that is why the new language to
prevent use of fetal tissue was added.

I asked if the congressman was also opposed to organ transplants. The
answer was no. I asked if it made a difference if the organ came from a
murder victim or an accidental death. Again the answer was no. I asked
then why the distinction between fetal organs/tissue and organs from
"adult" sources? The answer was again the belief that abortion is
unethical.

At this point I shared my own pro-life views and how they did not
conflict with the use of fetal tissue to save lives.  I feel that the
Research Freedom Act, which makes it a felony punishable by ten years
in prison if fetal tissue is made available for profit or has any
provisions that would designate who the beneficiary would be, is
adequate. This legislation, I feel, protects the unborn and adequately
addressed the concern that fetal tissue use would result in more
abortions. I compared it to organ transplant use causing more murders.
Not likely!

On the issue of ethics, I challenged HR 3514 ethics by trying to make
the Parkinson legislation and abortion issue. This completely
misrepresents the intent of the bill and attempts to detract from the
benefits that this bill is likely to generate. Each ten minute delay in
getting the Parkinson legislation passed will see one American stricken
by Parkinson's. To me this was an ethical consequence that needed
reconsideration by the congressman.

Fetal tissue transplant doesn't contribute to abortions any more than
organ transplant contributes to murder. Lets get on with our Parkinsons
work and let the pro-life movement focus on the events that lead to
abortion.

One final request by the aide to gain support for HR 3514 was that only
4 % of the HR1462 was likely to support fetal tissue research. Could we
forego that for the other 96% and at the same time recognize the
congressman's concern. While acknowledging that I am not learned in the
pyramiding value of fetal research, I told the aide that I would be
opposed to tying a scientists hands because if the 4% was a
foundational platform that allowed the 96%  to succeed, such a
restriction could have severe detrimental consequences to the 96%
finding the cure.  Therefore I could not support such a request.
There were at least 20 other visits that I participated in. All had
their moments but these two were memorable for me. As many have already
pointed out since our return home, there is still much work to be done
to get the Udall Bill passed and even more to find the cure. Lets
continue to be "Invisible No More".

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