At 4:25 PM 3/11/97, Jim Cordy wrote:
>Don't write this guy off so quickly.  Senator Santorum of PA was regarded
>as a tough (impossible) sell.  He is a fiscal conservative.  He was very
>interested in the $26 billion per year cost savings if we cure Parkinson's.
> Conversely we showed him a graph of the "baby boom" and noted that if
>something wasn't done about these age related diseases, they were going to
>blow any attempts to balance the budget out of the water as the "baby boom"
>ages

Jim's message mentioning "baby boomer" data reminds me that many of us can
use data from time to time to support our efforts to pass Udall.  For what
it is worth, here is a letter I sent to Sen. Kyl last year which just
happened to contain data on  the  baby boomer issue.  While it hasn't
convinced him - yet - it was a help in the effort to secure Sen.  McCain's
support.

Some of the tables, especially headings, may come out a little screwy (has
anyone figured out how to keep columns aligned?)

By the way, we're  starting a new campaign to get Sen. Kyl's support this week.


                Bob Dolezal
                                                        [log in to unmask]




May 17, 1996

Senator Jon Kyl
702 Senate Hart Office Building
Washington, D.C.  20510

Attention:  Tom  Alexander, Legislative Aide

Dear Tom:

It was good meeting with you last week to seek Senator Kyl's support for
the Morris K. Udall Parkinson's Research and Education Act.  Your questions
were pertinent, and your request for additional cost savings data to
present to the senator was reasonable and valid.

I believe my responses are reasonable and valid as well.  I hope you share
that belief when you have finished reading them.

Population

We don't know the Parkinson's population in America.  No one has taken a census.

Nonetheless, for a number of years NIH consistently estimated the
Parkinsonian population of this country at 500,000.  Recently it has cited
"up to 1.5 million" as a  possibility.  Other analysis indicates even this
number may be below the true total.

Whatever the current number, as the "Baby Boomers" grow older the
Parkinsonian population will skyrocket.  Here is the Census Bureau's
numbers, with emphasis on the 55 and older population:


                                      Pop.                 % of Pop.
% ofthePop.
Year           U.S. Pop.(mil.)      55&Up(mil.)          Increase 55&Up
55&Up
1995            263.4                   54.9                    -        20.84%
2000            276.2                   59.0                  46.1%      21.36
2005            288.3                   65.9                  57.0       22.86
2010            300.4                   74.6                  71.9       24.83
2025            338.3                  102.6                  73.9       30.33

Notice the increasing rate of growth projected in the "55&Up" population.
Four years from now almost one-half of our population growth will be
"55&Up."   By 2010 almost three-quarters will be in that category.

What is significant about age 55?  Fifty-seven is the average age of
diagnosis for Parkinson's.  As the growth of population in this age group
accelerates, the incidence of Parkinson's disease in America will also
accelerate.

A recent study in the New England Journal of Medicine presented pertinent
data on a sample of  East Boston residents over 65.  Applying data from
that study to the American population, an estimated 2.2 million Americans
over 65 have PD.  Also, the incidence of "Parkinsonism" doubles every ten
years in that age group.


Separately, Dr. Erwin Montgomery, a reknowned University of Arizona
neurologist specializing in PD, estimates some 2 million plus Americans
currently have PD.  By 2025, he projects a Parkinson's population at 3.7
million.

For this analysis, let's assume that some 3% of Americans over 55 are
victims of PD, recognizing that while this number may be somewhat high it
serves to compensate for the estimated 40% of PD patients who are under 60.

Costs

Total annual cost of the disease is said by NIH to be about $6 billion.  At
500,000 Parkinsonians, that's only $12,000 per patient, and at 1.5 million,
$4,000.  Either cost is fiction.

Dr. Ole Isacson, a noted neuroregeneration researcher at Harvard, estimates
that PD costs the nation between $31 billion and $56 billion annually.   On
a micro scale, in the early stages of a study designed and undertaken byThe
Parkinson's Action Network  to identify specific disease-related costs, the
average for fifty-two Parkinsonians  approximates $46,400 per person (see
the enclosed "Cost of Parkinson's' Summary").  For the sake of simplicity
and to be conservative, let's call it $40,000.

Applying the 3% incidence rate and a constant $40,000 cost per capita to
the growing American population over 55 through the year 2025, and the
numbers validate Dr. Isacson's estimates:

                Pop.   in   Millions            Cost in
Year            Over 55 w/PD                    $Billions
1995            54.9            1.65            $65.9
2000            59.0            1.77             70.8
2005            65.9            1.98             79.2
2010            74.6            2.24             89.5
2025           102.6            4.10            164.0

Whether these costs are met privately or through the government is only a
matter of bookeeping - they are ultimately borne by all of us.

Savings through Therapies

Delaying the severe symptoms of the disease through improved therapies will
save society considerable money.  Within one year of diagnosis the typical
PD patient loses his job.  And, odds soon double that he will fall, causing
increased and prolonged disability, and eventually death.

As the illness progresses, in spite of treatments currently available, he
loses more and more of the human capacities we typically take for granted.
When all therapies fail, he may go on, in a vegetative state, for many
years, imposing pain for family and friends and a financial burden on
society.  In the latter stages of the disease, if he can think, he can't
communicate those thoughts.  In fact, he can't do a thing for himself, not
a thing.  He is a prisoner encapsulated in a totally useless body and, most
cruelly, with a mind that may still work.

If Dr. Isacson and other specialists are correct, and new and improved
therapies are developed that alleviate symptoms or delay the disease,
immense savings will be achieved.

To illustrate, assume that, under Udall funding, savings would not begin to
accrue until the third year, and then would be rather modest both in the
number of patients and per patient cost savings.  Even with this guarded
optimism, the outlook for a significant and early "return on investment"
from Udall funding is terrific.

If, during the third year - because promising therapies now being developed
could be accelerated with additional funds - a mere one hundred thousand
people could stay on the job one additional year (average $18,200 each),
delay assisted living or a nursing home for one year (average $8,800), and
postpone "Dis/SSI/SS" (average $11,200) for a year, savings of $1.82
billion, $.88 billion, and $1.12 billion, respectively, would accrue to the
national economy.

The projected $70.8 billion cost to the nation in the year 2000 would be
reduced by almost $4 billion in the third year of Udall funding.  That's a
return of $4 billion on $300 million - 13,333% - over three years.

Unrealistic?  Not at all!  The experimental drug I am taking has delayed my
departure for places unproductive for at least a few years.  It is clear
that, if the research dollars proposed under Udall are authorized,
appropriated and invested wisely, even an annual return of 13,333% may be
conservative!

Earmarking

Your explanation that the senator is not fond of "earmarking," and has
voted against measures on that principle, got my attention.

The Udall bill may be "earmarking,"  but if it is I'd like to point out
that it is so only because research in PD has been, and is to this minute,
so terribly underfunded.

As evidence, please look at the three enclosed graphs.  Graph 1 shows the
amount of NIH direct research funding in FY91, by disease, for six selected
diseases.  Graph 2 shows the incremental dollar increase in direct funding
in the FY95 budget over that in the FY91 budget.   Graph 3 shows the
percentage increase for direct research funds between those years, by
disease.

Parkinson's, with the tiniest base to start with, continued to see the gap
widen.  PD funding had the lowest  percentage increase among the six
diseases.  Last in FY91, a more distant last four years later!

And the per patient numbers are just as pitiful:  $26 for Parkinson's,
$1,069 for AIDS, $295 for cancer - but, I left that data with you.

If this doesn't show that we've been underfunded, too much and too long,
please tell me how to prove it.

Perhaps this condition is partially our fault - the Parkinson's community
has not done the effective job of lobbying, both in the Congress and with
the American people, that  needs to be done.

Maybe it is because "people don't die from Parkinson's,"  a common
allegation that is  seldom believed among friends and family of a late
Parkinsonian.

Or, maybe it is because Parkinson's has been indelibly ingrained in many
minds as a disease of stumbling old people whose time has come to fall by
the wayside.

I don't know.  But I do know that this sixty year old is not prepared to
cash in his chips.  Nor are the many superior people I met while in
Washington, most younger than I, who are courageously fighting this
insidious disease.  They, and I, have faith in the research  people who say
- not for self-aggrandizement but because they truly believe it - that  a
relatively insignificant infusion of funds would result in absolutely
monumental results, even a cure.

"Earmarking" may be the technical term that applies to the process, but I
submit that  "catching-up," or "equalizing,"  far more accurately describes
the product.

Other Data

Other pertinent information concerning the disease was left with you.  But
if there is anything lacking, anything at all that will help convince
Senator Kyl of the fiscal and human validity of our cause, we will do all
we can to provide it.

I appreciate your time,Tom, and the genuine interest you have shown in our
request.  For the tens of thousands of Arizonans with the disease, and
their many caregivers and friends,  I ask Senator Kyl to join Senator
McCain, and Representatives Kolbe and Pastor, to honor the man and his
legacy, and become a co-sponsor of the Morris K. Udall  Parkinson's
Research and Education Act.

                                                Sincerely,



                                                Robert L. Dolezal
                                                Chairman, Arizona
Parkinson's Advocates

cc      Sen. John McCain
        Brad Udall




















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