At 10:02 AM 3/26/98 -0800, Joe Bruman wrote:
>The reason nobody has a clue about the number of PD cases in Utah
>(or anywhere else in the U.S.) is because NO SURVEY HAS EVER BEEN
>DONE! The reason no survey has been done is that it requires some
>support by a government agency, too much for a private institution
>to handle. And every time some state tries to have such a survey,
>it is shot down, by doctors who begrudge the time to fill out
>forms, by hitchhikers on the civil rights bandwagon whining
>about invasion of privacy, or by stupid politicians.
Joe, you'll remember that several years ago someone brought up the fact
that Nebraska had a law that would require that doctors register all the
Parkinsons patients that they saw. Reaction on this list was mixed, though
everybody seemed to understand that it would be good for the Parkinson's
community as a whole.
But the negative side seemed to outweigh the good.
Who would maintain the list, and could they keep it confidential? What if
they were ordered to release it by a court of law? We pretty well agreed
that the only way to keep the list secret was to have no list at all.
So what if there is a list? Who would it hurt if names on it were
revealed? Would the state use it to determine your eligibility for
driver's license renewal? Would your employer use it to terminate you
early? Would it be picked up by an advertising company for use as a mail
list and/or phone list? Could it be used against us in any other ways?
Lots of questions. I don't have answers. But before we get a count we
need a registry, and before we get a registry of Parkinsonians, these
questions ought to be well considered, if not answered.
Art
Arthur Hirsch [] [log in to unmask] [] Lewisville, TX
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Always Remember This:
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