Testimony Before the Senate Subcommittee
on Labor, Health and Human Services, and Education
Committee on Appropriations
September 28, 1999

Testimony for Joan I. Samuelson, President
Parkinson's Action Network

Thank you for this opportunity to testify before you on Parkinson's research funding.

We are most grateful to Chairman Specter and the other members of the Committee, in particular Senator Cochran, for making this day possible.

The Parkinson's Action Network was created in 1991 to give voice to a community that has been largely invisible, and to increase funding for Parkinson's research in an effort to speed research, deliver breakthroughs and cure this dreadful disease.

I am one of a million Americans who suffer with Parkinson's. Parkinson's is a devastating progressive neurological disorder that makes it difficult to walk, causes uncontrollable tremors, and in its final states robs individuals of the ability to speak or move.

It is caused by the degeneration of brain cells that produce dopamine, a neurochemical controlling motor function.

After 13 years with a Parkinson's diagnosis, I am at a crossroads - physically and medically.

Despite all my efforts and the best medicine available, I have moments every day when I live in a frozen body, waiting for my remaining dopamine cells to receive the drugs and let me move.

I watch, with frustration and fear, my ability to speak and swallow begin to slip.

I have already been forced to give up so much that I love: my law practice, running, hiking - and some of my dreams.

The hardest thing is being unable to do all the automatic unappreciated routines like getting out of bed in the morning, turning on the light, dressing.

Every day these activities get more and more difficult - and some days they are almost impossible.

Without a medical rescue, I know what is coming: the retreat from active, independent life; then the living death of the so-called "end stage."

Eight years ago in 1991, Anne Udall, whom I met in my first years as an advocate, took me to meet her father, Congressman Mo Udall.

At that time he was 15 years post diagnosis, retired from Congress because of his advanced Parkinson's, and living at the Veterans' Long Term Care Facility.

On the way there, Anne said almost without thinking, "I guess I'm taking you to see your future." And she was.

At that time, Congressman Udall was still able to sit up in a wheelchair and could speak somewhat, although it was very difficult to understand.

When I returned just two years later he was completely bedridden and frozen, but in all likelihood his mind was entirely intact. We'll never know.

I'm so much closer to that fate than when I first started advocating for a greater investment in Parkinson's research.

Losing independence and freedom is what scares me and those in the Parkinson's community the most.

Perhaps you can understand my increasing frustration; and why I am not content to wait patiently for a cure--not when I know more can be done.

I have been meeting with Parkinson's scientists from across the country - dozens of eminent researchers--working to shape a research agenda and budget that would match the promise in finding more effective treatments and getting us closer to a cure.

Wherever I go and to whomever I speak, I have found an almost unanimous consensus among the experts that we are close to unraveling this disorder.

But they all say they could be working much harder.

The real problem is not the science - it's the meager (and unacceptably small) size of the federal commitment to eradicate Parkinson's.

The attached research agenda is the first attempt to summarize the several areas showing great promise for a rapid return on a research investment.

The estimated annual cost for this focused research campaign is conservatively estimated by the neuroscientists at $244 million -more than double the initial Udall Act authorization.

Passing the Udall Parkinson's Research Act in 1997 was a great achievement, but the promise of that Act has yet to be realized.

The law authorizes the National Institutes of Health to spend at least $100 million for focused Parkinson's research.

Small increases to Parkinson's research have been made, and several additional Parkinson's research centers are promised. We're glad to see that.

But the new spending is a tiny effort in contrast to what the scientists could be doing.

Over the last eight years, we have tried with little success to significantly increase funding to Parkinson's research.

As the attached chart shows, when we started, the number for Parkinson's funding was pitifully low [stuck for years at about $26 million]--and it has never grown much greater.

The NIH has increased its reported number significantly but primarily by including increasing amounts of "related" funding, not funds for focused or direct research.

In fact, the gap between the funding and the potential research has become a chasm.

The small increase in Parkinson's spending has produced only a skirmish when what we need is a serious war.

It has never been altogether clear how much is being allocated for Parkinson's-focused research - the requirement in the Udall Act.

As a result, beginning in FY 97, Representative Fred Upton, the Udall Act's House sponsor, asked the NIH to document its reporting by providing information on the grants it included as "Parkinson's research."

Then, we asked scientists who are experts in Parkinson's research to evaluate the NIH research portfolio on Parkinson's.

In both years, the results confirmed what we were hearing from the nationwide research community: despite the passage of the Udall Act, funding for research that actually would benefit Parkinson's patients remains unacceptably low.

This past year, the Parkinson's Action Network asked a group of15 key Parkinson's researchers from many of the nation's top academic or independent research centers to review abstracts of the grants the NIH identified as spent for Parkinson's research in FY 98 at the National Institute of Neurological Disorders and Stroke (NINDS).

Many are the chairs of their departments; the majority receive and/or have received NIH research funding and currently serve and/or have served on NIH study sections.

(We had waited for several months for the NIH-wide list requested by several members of Congress but it was unavailable.)

Their evaluation found the federal research investment in Parkinson's to be far less than that report by NIH to Congress. Specifically, the scientists found that 26% ($19 million) of the grants allegedly spent on Parkinson's research, were spent on research that is non-related to Parkinson's.

For example, the grants funded research focused on Alzheimer's disease, Huntington's disease, drug abuse, AIDS, and work at the National Institute of Diabetes and Digestive Kidney Diseases, among other things, and had no likely benefit for Parkinson's.

Furthermore, the evaluation found that of the $75 million NINDS claims to spend on Parkinson's, only 44% ($33 million) is spent on research directly related to Parkinson's.

Another 28% ($21 million) is spent on research that may indirectly benefit Parkinson's, with the remaining 26% ($19 million) spent on research that will not help Parkinson's patients.

While we have felt enormously frustrated in our efforts to get a clear picture of Parkinson's research funding, we do not want this to be this a debate to be about numbers.

The real message is this: more funding must be devoted to Parkinson's focused research.

Without it, the scientific community won't have the ammunition to find effective treatments and the path to a cure to help me and the million Americans living with this disease.

The solution is with the Congress.

We believe NIH and the institutes with a particular focus on Parkinson's want to do more - but need the resources to do so.

They don't want to take funding away from other critical research - and neither do we.

What the Parkinson's community is asking is for the Committee to provide an additional $75 million more for Parkinson's - over and above what is currently being spent.

Of this funding we would like to see $ 50 million for the National Institute of Neurological Disorders and Stroke and $25 million for National Institute of Environmental Health Sciences - where the promise for finding a cure is the greatest.

The consequences of inaction are very real for the Parkinson's community.

The costs to society are enormous as well.

With annual costs now in excess of $25 billion, we are only seeing the tip of the iceberg.

Very soon the Baby Boom generation will reach the average age of onset - 57 - and the annual costs in medical care, lost wages, disability will grow exponentially.

At the height of the polio epidemic there were 58,000 people diagnosed with the disease.
And of that 20 percent became what they called "paralytic" - those permanently disabled and crippled by the disease.

People took enormous precautions in the summer polio "season" when it seemed to strike the most.

Parkinson's strikes 60,000 people every year and the season for Parkinson's is 365 days a year.

We must rally against Parkinson's as we did so successfully against polio.

We must bring an end to this disease that disables so many.

And the only way that is going to happen is through an adequately focused research effort that is driven by the desire to save lives.

Please don't let another year go by without fulfilling the promise of the Udall Act. Thank you.


<http://www.parkinsonsaction.org/press1.html>

janet paterson
52 now / 41 dx / 37 onset
613 256 8340 po box 171 almonte ontario canada K0A 1A0
a new voice: <http://www.geocities.com/SoHo/Village/6263/>
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