Gina,
In a way, we did march on Washington at the PAN Forum.  Believe it or not, a
march or sort of sit in has been discussed.  I think one of the problems of a
march would be our invisibility and the reasons for it which are often
discussed here. Have you ever read Joan Samuelson's speech before
congressional leaders?  Joan is the leader of PAN.  Her speech is really
excellent.  Here goes.  Barb Brock
---------
TESTIMONY OF JOAN I. SAMUELSON
PRESIDENT, PARKINSON'S ACTION NETWORK
Hearing of the House Appropriations Committee
Labor, Health and Human Services Subcommittee
February 4, 1998


I am one of a million Americans afflicted with Parkinson's disease and related
disorders.

I also am President of the Parkinson's Action Network, which was created in
1991 to give a voice to our community in the effort to speed research
delivering breakthroughs and a cure for this dreadful disorder.

I have the job today of focusing your attention on the particular needs of my
community, and  to convince you that the 1999 budget of the Labor-HHS
Appropriation must - yes, must - include a substantial increase for
Parkinson's research funding, pursuant to the $100 million authorization in
the Udall Parkinson's Research Act enacted in the last Congress.

Why am I so emphatic?

· Because the current federal policy on Parkinson's wastes billions in public
and private dollars coping with its effects, when millions would produce a
therapy that would restore function, and bring us back into the world.

· Because the disparity in funding attributable to variations, invisibility or
political clout cannot continue.


Parkinson's - the disorder:

Parkinson's is a movement disorder caused by the degeneration of brain cells
that produce dopamine, a neurochemical controlling motor function.

By the time 80% of those cells stop functioning, symptoms of stiffness, tremor
and slowness of movement begin to emerge.

The conventional treatment for Parkinson's is a 30-year-old drug commonly
known as "L-dopa"  which attempts to replace the missing dopamine with an
artificial substitute.

It usually restores function to a certain extent and it may seem at first like
a miracle drug.

But it works inefficiently, it produces side-effects, and eventually it does
not work at all.

As the dopamine cell degeneration advances, it strips away automatic movements
needed to walk, talk, swallow, even move at all.


Parkinson's - the impact:

Initially, we survive on a diet of desperate hope, fed by L-dopa and related
medications.

We attempt to keep work, family and life moving smoothly, as the symptoms
change in degree and combination throughout the day, affected by diet, stress
and fatigue.

Almost immediately, though, things dear to life are taken, such as, in my
case, the love of running and backpacking.

That begins a process of loss that advances to strip away essential functions.


The impact on work:

Very soon it begins to affect working life, making jobs dependent on motor
skills impossible and jobs with any measure of stress increasingly difficult.

In a 1988 study, a group of researchers at the University of Rochester
calculated that of the 44% of Parkinson's patients in the first stages of the
disease, 31% would lose their jobs within one year as a result of Parkinson's.

Despite the common myth that Parkinson's only affects the oldest sector of the
country, in fact the average age of symptom onset is 57, with a third of all
victims' symptoms starting in their 20's, 30's and 40's.

As a result, Parkinson's-caused early retirements and forced disability are
the norm.

Some lose their jobs simply due to the stigma.

The financial impact is enormous.

Every sort of work is affected.

People who must have reliable motor movement to do their work - beauticians,
house painters, typists - lose their employment quickly.

For the rest of us, it is a somewhat slower process, but at some point the
tension of worrying about how to fit a job's demands in the daily schedule of
Parkinson's symptoms simply is too much.

In my case, as a practicing lawyer and now running am advocacy organization
for our community, these are my daily struggles: worrying about getting to a
morning meeting and wondering when my first dose of medication will "kick in,"
enabling me to function; needing to make a phone call, but not being able to
hold the telephone still with a shaking hand; seeing others put off by my
lurching gait, or my trembling hand.


The impact on daily functioning:

At some point the symptoms become an impossible hurdle, as the tiny number of
dopamine neurons left functioning just can't team up with the medication any
more, and are complicated by drug side-effects.

At that point, the swing between too little and too much movement is just too
much to manage in the outside world.

We may continue living for a long time, but we drop out of sight.

The nation - indeed, the world - has been riveted on the impact this disorder
has had on Muhammad Ali.

It is essential to remember the unknown Americans who, like Ali, are losing
the battle to live a normal life.

They tell of family holiday dinners they can't attend, for fear of knocking
food off the table.

They talk of walking into the bathroom, then suddenly freezing up and needing
help to finish bathing or using the toilet.

Every person afflicted with Parkinson's can describe the effort to manage
their medication so they are at their best when out of the house.

And then, one day, that person starts disappearing, as the act of coping
becomes too much.  Perhaps if we died soon as a function of Parkinson's its
impact would appear more dramatic.

Instead, we slip out of the functioning world and are forgotten.


The impact on our visibility:

There is a common denominator in all these cases: we start out courageously
trying to power through our disability, ignoring it, even hiding it, to
maintain our normal lives.

We end up silenced and imprisoned in our homes, our care facilities.

In either case, there is an insidious ingredient: our suffering has been
rendered invisible to the outside world.

As a consequence, we have been neglected.

Attached is a chart, from numbers provided by the NIH, showing direct
Parkinson's research funding by the NIH to be flat, at less than $30 million a
year - that is, less than $30 per patient - for a decade, and only slightly
more now.

Estimated 1997 direct Parkinson's spending totaled $34 million, or $34 per
patient.

During a decade in which the American public and the Congress have teamed up
to attack a wide variety of killing and disabling disorders, we have left out
of the fight.

We are finally here, coming out of the closet in some cases, coming in
wheelchairs and walkers in others, and being represented by loved ones when we
can't get here at all.

And the Congress is beginning to respond.

Last fall Congress enacted the Morris K. Udall Parkinson's Research Act, which
would authorize the long overdue expansion of Parkinson's research, with
annual research funding at $100 million a year, which is the amount that
Parkinson's researchers tell us they need to maximize existing scientific
potential and speed the breakthroughs we need.

We are looking to this committee to fund it, with a $100 million appropriation
in the FY 1998 budget.

There is a terrible irony at work, however.

As we walk the halls of Congress to drum up support for the Udall bill and the
funding it will need, we are told that no longer will Congress direct the NIH
in its funding needs, and that there is no more money to spare.

In effect, we are told that our visibility comes too late.

There are two reasons we cannot accept this answer.

First, it is grossly unfair to maintain a status quo funding disparity that,
in effect, continues to penalize us for our disease-caused invisibility.

As any review of NIH spending will show, technical elimination of earmarking
has by no means eliminated de facto earmarking: spending by diseases continues
at rates pre-ordained by earlier increases.

As our "funding disparity chart" (attached) is just one such example.

The President's recent announcement of a doubling of the Cancer Institute
budget over the next five years demonstrates this best.

Earmarking continues under other names.

Parkinson's continues to be excluded.

There is another important reason the Congress must increase Parkinson's
funding in 1999.

As federal taxpayers, we are owed a rational health spending policy.

That requires spending money to cure us rather than just care for us.


The cost to America:

The cost of Parkinson's in America is massive.

In testimony before the Senate Special Committee on Aging in 1995, Dr. Ole
Isacson of Harvard estimated the cost to be in excess of $25 billion.

The Network's surveys of the costs Parkinson's disability incurs on the
country -- in treatment, physical therapy, hospitalization, disability
payments, lost productivity, and assisted living -- indicate an equal or
greater amount, which translates into a massive burden on public sources such
as Medicare, Medicaid, and Social Security disability.

The cost is so high because we typically live in a disabled state for a long
time, and the battle against loss of function is ongoing, and expensive.

Parkinson's medication alone is very expensive, probably costing Americans
well over a billion dollars.

The largest costs can be due simply to losing the ability to work or care for
oneself, which is absorbed by the government through higher Social Security,
Medicare and Medicaid spending.

This takes a huge toll on the American families hit by Parkinson's, but it
also burdens the society and hits the taxpayer.

This massive financial waste will rise steeply if Parkinson's is not cured
before my generation of "Baby Boomers" hits the years when Parkinson's
symptoms are most prevalent.

Imagine the additional burden of lost tax revenue, medical care and disability
from Baby Boomers with Parkinson's.


The scientific promise:

An examination of the scientific promise of this disorder shows that an
investment in Parkinson's research would return many-fold.

The Dana Alliance for Brain Initiatives describes Parkinson's as "one of the
brightest spots in brain research."

There is no doubt that huge, revolutionary breakthroughs are coming, and they
will drive breakthroughs for many other neurological and non-neurological
disorders - Huntington's, ALS, Alzheimers, spinal cord injury, diabetes and
more.


Consider:

· Neural growth factor, in particular one known as GDNF.  Animal studies shows
the growth factor revives the dormant cells and produces dramatic symptomatic
improvement.  Human clinical trials have begun.

· Neural cell transplantation, which has shown that symptomatic improvement
results from the flourishing of transplanted dopamine neurons.  A few patients
are now symptom-free without  medication.

· Advances in genetics and in links between Parkinson's and environmental
factors such as heavy metals, herbicides and pesticides.

· Steady increase in insights into the exact disease process, in which the
cells appear to self-destruct after assaults from one or more of those
causative factors.

· Rapid advances in the understanding of the role of genetics in Parkinson's,
which also brings new clues about the disease process-and its undoing.  A
widely-cited 1997 discovery of the alpha-synuclein gene did not produce a
causal gene per se, but is a major clue in the matrix of understanding.

But without question, those discoveries are coming in slow motion.

Every scientist describes immense frustration with the slow pace of working on
these breakthroughs because of the tiny research investment.

That translates directly into a breakthrough deferred into the future.

According to testimony before the Aging Committee last year by Dr. Ole Isacson
of Harvard, an additional $20-40 million per year spent to fund 100 of the
most effective preclinical and basic research programs (@ $200,000-$400,000
each) will produce new Parkinson's treatments within 2-3 years, an effective
therapy or cure within 5 years.

According to a study by Dr. Roger Kurlan of the University of Rochester, even
a 10% slowing of progression will save $327 million per year.

That is ten times more than the federal government is spending on Parkinson's
research.

We have been told there may not be enough money in the Labor-HHS allocation to
fund the Udall Act in full.

It is suggested that we are forcing a reduction in funding for diseases that
have done a better job at telling their story, and been rewarded by higher
research investments.

Although we feel it is important to point out this disparity, reducing
productive research efforts in other biomedical arenas is not the way to do
it.

But the money must be found.

Perhaps Mo Udall is beyond saving.  But is Muhammad Ali?  What about Billy
Graham, or the Pope, Attorney General Reno or Johnny Cash? And what about me,
or about the unknown, invisible Americans I represent today?

The 1999 Labor-HHS appropriation must provide the $100 million authorized
because this country literally cannot afford to lose me or the many others in
the same predicament.

With enough functioning dopamine neurons back in action, all of us could be
back to working, caring for others as well as ourselves, paying taxes instead
of applying for Social Security disability.


Conclusion:

The human suffering that results from Parkinson's is immense and incalculable.

That alone is a good reason to invest in a cure.

The fiscal drain compels it.

The only reason we have been neglected is our historical invisibility, caused
by the ravages of Parkinson's, the devastating stigma attached to it, and
inevitable silencing of us it causes.

We now have "come out," as it were, to tell our story, only to be told it's
too late, that earmarking funding on the basis of need, or scientific promise,
or fiscal sense, is inappropriate.

That makes no sense.

We desperately want to hold on to our life dreams and our dignity.

That, given the scientific promise of therapeutic breakthroughs, should be
enough to justify the investment.

What we also know now is that it is fiscally irresponsible not to.

The Udall Parkinson's Research Act's $100 million authorization must be funded
in FY 1999.