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the following was written by Perry Cohen. PERRYCOHEN@aolcom
In a message dated 11/7/98 4:35:45 PM, PERRYCOHEN wrote:
>BARBARA --- would you please post this on the listserv.
>
>
>I would like to underline Mike Clayes' comments regarding the potential trap
of
> emphasizing competition among different disease groups in our public policy.
>In this regard I was interviewed recently for a forthcoming article the
Washington
>Post on disease politics. National Health Reporter, Judith Havemann, is
doing
>the article on the role of celebrities in disease funding decisions. Because
of
>the recent prominence of PD, we will be included, but not featured
exclusively.
>Her editors are sensitive about the appearance of bias. < Those who attended
the
>1997 PAN forum will remember that Ms. Havemann gave a presentation, and did
not
>mention that her husband Joel has PD and is a member of our "young" group in
Washington
>>
>
><<
>
> "Pd & AIDS
>
> It's great to see so much energy on the List, but
> with all due respect, I suggest we try to focus
> our energies on increasing education, awareness
> and research funding for Parkinson's disease. It
> does not serve our interests to criticize any
> other disease group - especially one as powerful,
> sensitive and organized as the AIDS community. To
> the contrary, we should learn from and, to the
> extent possible, duplicate their most effective
> methods - and that goes for every effective
> advocacy group, from breast cancer to the NRA.
>
> Allow me to offer one additional cautionary note:
> There are plenty of people in Washington and
> around the country - Members of Congress,
> bureaucrats, folks in the media, competing special
> interests, etc. - who would like nothing more than
> to see disease advocacy groups fight amongst
> themselves. We cannot - and will not - fall into
> that trap.
>
> We are not only fighting for lives of people with
> Parkinson's, we are fighting to change the
> spending priorities of our nation. We are making
> the case that medical research is one of the
> wisest, most compassionate and most fiscally
> responsible investments we can make with our tax
> dollars. We can't afford to undercut our argument
> by making judgements on who is more or less
> deserving.
>
> The Parkinson's community has been very effective
> presenting our own case and showing why we deserve
> more research funding than we are currently
> receiving. Whatever comparisons we make with the
> funding levels of other diseases are done only to
> demonstrate the inequity of treatment Parkinson's
> currently receives from NIH - not to denigrate the
> worthiness of any other area of research. We are
> not asking for Parkinson's to be treated any
> better than AIDS or cancer or Alzheimer's, but we
> won't accept be treated any worse.
>
> Pursuant to the posted requests, below is the data
> from our " Fiscal Year 1998 Funding Disparity
> Chart." Due to the format of the List, not all
> the source and footnote information is included.
> Please contact the Network at (800) 850-4726 for a
> complete copy of our funding disparity chart, or
> any of our advocacy materials.
>
> Disease NIH Funding #
> Afflicted Dollars/Afflicted
> HIV/AIDS $1,607,000,000
> 980,000 $1,640
> Cancer $2,942,000,000
> 8,000,000 $368
> Multiple Sclerosis $68,596,220
> 350,000 $195
> Heart Disease $767,095,130
> 7,000,000 $110
> Alzheimer's $261,750,000
> 4,000,000 $65
> Parkinson's $41,000,000
> 1,000,000 $41
>
>
> >>
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Subject: Re: Udall/ disease politics
Date: Sat, 7 Nov 1998 16:35:45 EST
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BARBARA --- would you please post this on the listserv.
I would like to underline Mike Clayes' comments regarding the potential trap
of emphasizing competition among different disease groups in our public
policy. In this regard I was interviewed recently for a forthcoming article
the Washington Post on disease politics. National Health Reporter, Judith
Havemann, is doing the article on the role of celebrities in disease funding
decisions. Because of the recent prominence of PD, we will be included, but
not featured exclusively. Her editors are sensitive about the appearance of
bias. < Those who attended the 1997 PAN forum will remember that Ms. Havemann
gave a presentation, and did not mention that her husband Joel has PD and is
a member of our "young" group in Washington >
<<
"Pd & AIDS
It's great to see so much energy on the List, but
with all due respect, I suggest we try to focus
our energies on increasing education, awareness
and research funding for Parkinson's disease. It
does not serve our interests to criticize any
other disease group - especially one as powerful,
sensitive and organized as the AIDS community. To
the contrary, we should learn from and, to the
extent possible, duplicate their most effective
methods - and that goes for every effective
advocacy group, from breast cancer to the NRA.
Allow me to offer one additional cautionary note:
There are plenty of people in Washington and
around the country - Members of Congress,
bureaucrats, folks in the media, competing special
interests, etc. - who would like nothing more than
to see disease advocacy groups fight amongst
themselves. We cannot - and will not - fall into
that trap.
We are not only fighting for lives of people with
Parkinson's, we are fighting to change the
spending priorities of our nation. We are making
the case that medical research is one of the
wisest, most compassionate and most fiscally
responsible investments we can make with our tax
dollars. We can't afford to undercut our argument
by making judgements on who is more or less
deserving.
The Parkinson's community has been very effective
presenting our own case and showing why we deserve
more research funding than we are currently
receiving. Whatever comparisons we make with the
funding levels of other diseases are done only to
demonstrate the inequity of treatment Parkinson's
currently receives from NIH - not to denigrate the
worthiness of any other area of research. We are
not asking for Parkinson's to be treated any
better than AIDS or cancer or Alzheimer's, but we
won't accept be treated any worse.
Pursuant to the posted requests, below is the data
from our " Fiscal Year 1998 Funding Disparity
Chart." Due to the format of the List, not all
the source and footnote information is included.
Please contact the Network at (800) 850-4726 for a
complete copy of our funding disparity chart, or
any of our advocacy materials.
Disease NIH Funding #
Afflicted Dollars/Afflicted
HIV/AIDS $1,607,000,000
980,000 $1,640
Cancer $2,942,000,000
8,000,000 $368
Multiple Sclerosis $68,596,220
350,000 $195
Heart Disease $767,095,130
7,000,000 $110
Alzheimer's $261,750,000
4,000,000 $65
Parkinson's $41,000,000
1,000,000 $41
>>
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