Excerpt from the December 1996 Parkinson's Action Network "Action Reporter",
an Advocacy Report for the Parkinson's Community-
Parkinson's Bill Will Come Back Next Congress
by Robert Dolezal
My once cluttered email mailbox is empty now. Urgent messages to
contact Newt Gingrich or Tom Daschle or Trent Lott come no more. A dream
that through the hard work of thousands had become a hope, then matured into
a possibility , and then a real expectation, had ended in failure.
The Mo Udall Parkinson's research bill now rests in the limbo of
legislative near misses. Which is a national disgrace. For Udall is a
splendid bill, a sound investment of public funds not only for those
Parkinson's victims whose dopamine has run out, and their families whose
resources may entirely run out by the time they die, but for all America.
And Udall has public support. When I sought signatures on a petition in
order to get Senator John McCain behind the bill (he did), of the well over
one hundred I asked, only two refused to sign. Around the country other
advocates had similar experiences.
But public support was irrelevant in the recently adjourned Congress.
In the waning days of the session after Senate approval, the bill foundered
in the House on the rocks of the political right. Two Republicans in control
of, of all things, the Commerce Committee, Michael Bilirakis of Florida and
Thomas J. Bliley, Jr. of Virginia, refused to allow the bill to get to the
House floor for a vote.
From the early days, when supporters of the Udall bill were but a
spoonful in both Houses (Ed Pastor was Arizona's only original co-sponsor),
the numbers had expanded to 241 congressmen and 62 Senators as the session
drew to its close. Parkinsonians, families and friends, through letter,
phone, email and personal visits on the Hill, won over not only many
initially uncommitted Members but also a number of formidable foes.
In the end, research involving fetal tissue, a small but important part
of Parkinson's research (and also important for Alzheimer's research) loomed
as "The Great Satan" for a few right-to-life Congressmen. Representative
Chris Smith (R-NJ), who in late May introduced his own Parkinson's Research
Act (it banned fetal tissue research entirely, and received scant support),
was the spiritual leader.
No one believes fetal tissue transplant is the answer to Parkinson's
disease. After all there are some 1.5 million Parkinsonians in this country
alone. Rather, the tissue is needed for research so a viable dopamine
producing replacement can be developed.
Smith, and others mindless of the millions of lives this research would
save, overlook the existence of strict federal law imposed on the use of
tissue from legal abortions: no payment can be made, recipients cannot be
designated, and the decision to abort must be made before any discussion of
tissue donation. Violation call for up to ten years in federal prison.
Clearly, no woman is encouraged to have a legal abortion so that her
fetus may be used for research. But once she chooses to do so, and it is
done legally, is there some moral or ethical purpose served by trashing
tissue that may save the lives of millions?
A few years ago, a right to life Republican governor of an eastern state
received a lifesaving heart transplant. The donor turned out to be the
victim of a vicious murder. Should that heart have been discarded because it
was the tainted product of a heinous act, not only immoral and violent, but
illegal as well?
Two separate issues emerge from this experience.
First, is government functioning properly when one or two individuals,
because of committee status, can prevent consideration of legislation favored
by the majority of Congress?
Second, is any moral or ethical purpose served when a life-sustaining
resource is trashed?
Parkinson's advocates learned a lot from this experience. The
congressmen, should they win their upcoming elections, will see us again.
Robert L. Dolezal, a Tucson resident , holds a master's degree in economics
from the University of Illinois. He is a free-lance writer and advocate for
Parkinson's research funds. This editorial appeared November 2, in the
"Arizona Daily Star."
