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To Listserv Friends, from Robin Elliott (exec, dir. PDF):

I recently sent a note to Ms. Herman on her interesting and thoughtful
postings on "PWP numbers."  She thought my comment might merit wider viewing.
Here t'is ...

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Subj:=09Numbers
Date:=0998-06-11 07:59:10 EDT
From:=09PDF CPMC
To:[log in to unmask]
CC:=09mtuchman@EARTHLI, [log in to unmask], HOFFHEIMER

If you will e-mail me your mailing address, I will be happy to send you a
copy of a cost study (of PD) we recently commissioned at the PDF.  It
included a review of 19 epidemiological studies of incidence and prevalan=
ce.


My advice: don't sweat it.  None of the available studies are projectible=
 to
the entire US (several are from overseas) and those that are the most
projectible show numbers from the low- to mid- hundreds of thousands.  NI=
H
estimates about a half million and the drug companies (who have a very
special interest in knowing these numbers) have a similar estimate.  Beca=
use
we know that there is a high misdiagnosis rate in PD patients (30 percent=
?)
and because there are probably tens of thousands out there in the hinterl=
ands
who never present for a diagnosis, we believe we are entitled to suggest =
a
higher end to the range--hence the common usage at the PDF: "as many as o=
ne
million."

We also need to present a more-or-less unanimous figure politically, and =
the
"one million" is pretty well stuck in the public perception.  I would cou=
nsel
strongly against going higher ("one and a half" ... "two million or more"=
 ...
I have seen both on the Internet recently).  Exaggeration too far beyond
known facts and scientific consensus isn't good PR.  For those who want t=
he
numbers, those we have (in my view) are already quite powerful enough.

I was interested in your comments and am sharing them with the fellow who=
 did
our desk research on the cost study.  Good and provocative thinking.

- robin elliott, executive director, Parkinson's Disease Foundation


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