Will,

Your response is excellent, informative and helpful.
Thanks a lot. I always learn from you.

I agree about not exaggerating PWP numbers. Lately,  I have been saying
an ESTIMATED 1.5 million in the US, and providing the sources.  The New
York office of he APDA  provided the estimate of  3500 PWP's per
Congressional District  to us here in Maine, two years ago, when we were
trying to get the Udall Act passed.

Someone out there could probably get a research project going to survey
the uncounted
population groups of PWP's  Will, do you remember seeing a post on the
List about a Boston high-rise apartment building complex for the elderly,
that a Masschusetts medical research team went to, where something like
150 of 500 residents, NONE of whom had EVER been diagnosed, showed
visible signs of PD??

Could this Boston discovery add weight to the suggestion  that there are
probably closer to 1.5 million or more PWP's?


Ivan

On Sat, 5 Jun 1999 23:29:11 -0400 will johnston
<[log in to unmask]> writes:
>Numbers are important, but exaggeration can get us into trouble.
>
>My comments are marked XXXXXXXXX     XXXXXXX.
>
>
> Ivan Suzman  on June 5 said:
>
>Subject: P.A.N. Petition UNDERCOUNTS PWPs? This is a controversial
>message-
>but it is necessary for me to get this off my chest.
>
>I take issue with the PAN Petition's accuracy. Numbers are VERY
>important.
>
>Why is the PWP number only 1,000,000 in the Petition?I think that the
>NPF
>and the APDA  both conservatively estimate 1.5 million American
>PWP's.
>Please help if I am incorrect.
>
>Even 1.5 could be a substantial undercount.  Many, many
>sub-populations of
>unknown and UNDIAGNOSED PWP's, such as the instituionalized, the
>high-rise
>elderly, the poor, the rural, the ghettos and barrios of people of
>color,
>and those who hide in shame of their symptoms are well-known to
>exist.
>
>+++++++++The most recent "official U.S. government estimates" I have
>are
>1990 figures  from the OFFICE OF TECHNOLOGY ASSESSMENT [a joint group,
>now
>defunct, of the combined House of Representatives and the Senate] in
>"NEURAL GRAFTING - REPAIRING THE BRAIN AND SPINAL CORD" page 3.
>-----------------------------------------------------------------------
>Neurological disorder           Prevalence
>
>Alzheimer's disease             1 to 6 million
>Stroke                          2.8 million
>Epilepsy                        1.5 million
>Parkinson's disease             500,000-650,000
>Multiple sclerosis              250,000
>Spinal cord injury              150,000
>Brain injury                    70,000-90,000 [totally disabled from
>head injury]
>Huntington's disease              25,000
>Amyotropic lateral sclerosis      15,000
>
>NOTE: Prevalence is defined as the total number of cases of a disease
>estimated to be in existence in the United States at any given time.
>
>--------------------------------------------------------------------
>
>Numbers get very fuzzy.  If we count the undiagnosed, should we also
>deduct
>the false PD diagnoses which are estimated at almost 30% of PD
>diagnoses?
>
>I have tried in vain to find some good hard numbers, but there are
>none
>available to my knowledge. I tried to get Sinemet production numbers
>from
>DuPont and was turned down flat. PD is not a reportable disease so
>there is
>nothing in the public records.
>
>+++++++++++++++
>
>
>There are also the unknown numbers of pre-symptomatic PWP's  who
>exist, in
>the absence of a  standard dopamine deficiency test before VISIBLE
>symptoms
>appear.
>
> The P.A.N. petition says there are 60,000 new cases per year in the
>USA.
>That means  that every 16 and two-thirds years, the  entire current
>crew of
>PWP's would all have to have died off.(60,000 x 16.67= 1,000,000)
>
>
>+++++++++
>
>The math here is right, but it one should think in terms of averages.
>There is not a 100% turnover every 16.67 years. If the average age at
>diagnosis is 59 years [there are no hard figures for this either],
>that
>would indicate an average life expectancy to age 76 which on average
>isn't
>too bad..
>
>++++++++++
>
>
> Can P.A.N. 's petition numbers be changed before copies are
>submitted?
>They are almost certainly doing us a Disservice.
>+++++++++
>The APDA,  the PDF, and the NPF are special interest groups and want
>to use
>numbers that make the cause seem more relevant to more people.  Just
>because they use the higher numbers does not make those numbers right.
> The
>figure I use is a million plus or minus a half-million. That number
>prompts
>some readers and listeners to ask why I don't know how many of us
>there
>are. The mere fact that we don't know may prompt some to say that
>something
>should be done to identify the size of the problem. That could be a
>help to
>us in itself.

^^^^^^  WARM GREETINGS  FROM  ^^^^^^^^^^^^  :-)
 Ivan Suzman        49/39/36       [log in to unmask]   :-)
 Portland, Maine    land of lighthouses           deg. F   :-)
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