February 19, 1999 12:03 PM 

Morris K. Udall Parkinson's Research and Education Act

I. The Strong Public Need for the Act

Parkinson's afflicts approximately one million Americans, of whom about 40 percent are under the age of 60. The cause of Parkinson's is not known at this time. What is known is the cells producing dopamine (a neurochemical) inexplicably degenerate. Persons afflicted with Parkinson's suffer uncontrollable tremors, muscle stiffness and a loss of motor function. Eventually, Parkinson's renders its victims incapable of caring for them-selves, placing a tremendous toll on the victims, their families and loved ones. It is estimated that the disease costs society $25,000,000,000 annually. Yet, the federal program for Parkinson's research is grossly underfunded. Parkinson's research receives far less support than most other disorders, totaling only $32 per patient in direct funding in 1996.

II. The Act's Proposal for Meeting the Strong Public Need

The Morris K. Udall Parkinson's Research, Education and Assistance Act was introduced on April 6, 1995, by Senator Mark 0. Hatfield (R-OR.) and Congressman Henry Waxen D-CA). This bill will:

Expand basic and clinical research into Parkinson's to at least $100 million; Fund Parkinson's research centers across the country; Authorize Morris K. Udall Excellence Awards; Authorize patient and family registries; and Authorize a national Parkinson's Disease Education Program and information clearinghouse.

III. Morris K. (Mo) Udall

The bill is named in honor of former Arizona Congressman Mo Udall who served in the House from 1961-1990. Diagnosed with Parkinson's in 1978, Mo Udall was forced to retire due to Parkinson's complications and is now living in a long-term hospital facility in Washington. As char-man of the then-House Interior Committee, Mo was widely respected for the ability to steer such controversial legislation as the Alaska Lands bill and the Surface Mining bill through a contentious Congress by being able to charm, cajole and outwit his opposition. Congressman Udall contended for the Democratic nomination for President in 1976 and, although he finished second to Jimmy Carter, he gained widespread respect and affection for his grace and courage. His determination to live a full and vigorous life even though afflicted with Parkinson's has gained him further admiration.

IV. Contacts

Senator John McCain (R-AZ) 202/228-2862 - ask for Sonya Sotak

Senator Paul Wellstone (D-Mn) 202/224-8438 - Ask for Linda

Congressman Henry Waxman (D-CA), 202/225-3976 - Ask for Allison

Congressman Fred Upton R-MI), 202/225-3761 - ask for Jane Williams

Joan Samuelson, President, Parkinson's Action Network, 800/850-4726

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MORRIS K UDALL PARKINSONS RESEARCH AND EDUCATION ACT.

WHAT IS IT? WHAT WILL IT ACCOMPLISH?

What will the Udall bill do?

The Udall bill is the first legislative effort in history devoted to Parkinson's research. It authorizes $100 million in annual funding to the federal Parkinson's research program administered by the National Institutes of Health (NIH) -- up from the $26 million currently spent -- and provides a focused program to structure and support research efforts the scientific community deems necessary to deliver breakthroughs and the cure.

What is Parkinson's?

Parkinson's is a neurological disorder caused by the degeneration of brain cells that produce a neurochemical, dopamine, controlling motor function. Symptoms include tremor, muscle paralysis and slowness of movement. Although medication (commonly known as L-dopa) can mask the symptoms in most victims eventually it loses its effectiveness and produces side effects. In advanced stages, a Parkinson's-afflicted person loses the ability to move, swallow or speak. The likelihood of getting Parkinson's increases with age, with the average age of onset being in the mid-50's, although some people are afflicted as early as their 20's.

How many Americans have Parkinson's?

Parkinson's is commonly said to affect about a million Americans, with 50,000 diagnosed each year. But a recent study published in the New England Journal of Medicine (January 11, 1996), found 32% of a sample over-65 population to be clinically diagnosable with Parkinson's disease. Applied to our total population over 65, that would be 2.2 million Americans with the disease. In the age group over 65,34% exhibited "signs of parkinsonism," and "some...probably.. (with) mild, subclinical Parkinson's disease." Applied to America's over-65 population, that would be 23 million people "with signs" of the disease. The risk of death for those "with signs" is twice that of the population without signs.

Why is it called the Udall bill?

Mo Udall, Democrat from Arizona, represented the Second Congressional District for 30 years, and was a candidate for President in 1976. In 1991 he was forced to retire from Congress due to Parkinson's and its complications. He presently lives in Washington D.C. at the Veteran's Affairs Long-Term Facility. Congressman Udall was an extremely popular and effective legislator, and is greatly missed in that body and elsewhere nationwide, The bill is named to honor Congressman Udall and to symbolize the great toll taken by Parkinson's in this country.

What research is not being done because of inadequate funding?

In a 1995 Parkinson's Research Planning Conference hosted by the NIH, scientists specified an array of needed research needed as falling into three categories: basic "bench science" into the cause and "pathogenesis" of Parkinson's (i.e. the nature of the disease process); pre-clinical questions remaining to prepare therapeutic strategies for application; and clinical trials of therapies ready for human experimentation. The NIH is supporting very little work in each category, with critical areas funded only minimally or not at all. Researchers describe competition for finding as "brutal," and leave important experiments undone. Work agendas for most areas move at a minimal pace; they are chronically understaffed, and shutdown of valuable research teams is a constant threat.

How soon can Parkinson's be eradicated and how much money"' will it take?

The top priority is a treatment that will effectively eliminate Parkinson's symptoms, by retarding or reversing dopamine cell death or replacing the missing neurochemical those cells produce when healthy. Experimental approaches with demonstrated potential include neural growth factor, tissue implants, neuroprotective agents and more effective pharmaceutical remedies than those presently available. Although not yet perfected, these therapies already are restoring lost function and cutting years off the state of symptom progression in human and animal trials. With the $ 100 million authorized by the Udall bill, premier researchers predict improved therapies within a few years and an effective therapy or cure within five years.

At a time of budget cutbacks. is this the time to seek expansion of the research budget?

This is exactly the right time, because advancing the cure of Parkinson's will stop a huge drain on federal and private spending to care for Americans afflicted with the disease. Every estimate of the cost of caring for people with Parkinson's reveals that "the cost of care" is much larger than "the cost of the cure." 1995 U.S. Senate testimony estimated the medical care, disability and lost productivity resulting from Parkinson's as exceeding $25 billion per year The "cost of err" will only increase as the "baby boom" generation ages. Further, no responsible governmental budget can leave the victims of Parkinson's without the same research support afforded other diseases. As the finding disparity chart reveals, Parkinson's has historically been neglected in research finding allocations. This cannot continue.

Is it realistic to 'bank on a cure." considering how elusive they can be?

It is hard to imagine a wiser investment. Since the discovery of L-dopa 30 years ago, Parkinson's has distinguished itself as a neurological disorder that responds to research efforts with breakthroughs. Significant progress has been made in understanding Parkinson's cause (a possible combination of genetic susceptibility and attacks on the cells from external, possibly environmental, and internal forces) and the nature of the disease process. Meanwhile, dramatic advances have been made toward a therapy that will effectively restore lost function. Each incremental improvement in function for those suffering Americans will reduce the flood of health and disability dollars resulting from uncontrolled symptoms. Meanwhile, the same finds also will accelerate understanding other neurodegenerative disorders and treatments, such as a recent promising application of cell transplants for Huntington's disease.

Why can't the private sector raise adequate funds for research?

Similar to other diseases, private Parkinson's foundations and scientific institutions conducting Parkinson's research are engaged in active private fundraising efforts. The finds raised, however, are not adequate to support the necessary research waiting to be performed. The federal research funded by the NIH, totaling nearly $12 billion, is recognized worldwide as the engine driving biomedical breakthroughs. Most historic breakthroughs -- such as the polio vaccine -- have been financed by a combination of funding from both private and public sources, and would not have resulted as quickly without the federal investment.

Why not just allow the scientists at the NIH to decide how it will spend federal research funds?

The success of the NIH in delivering biomedical breakthroughs has been the collaboration of those scientists with elected policy-makers who have the job of making responsible decisions on the use of taxpayer's dollars. Many major investments in research (on Alzheimer's cancer, AIDS and others) have been made with the active involvement of the Congress and Administration. The Udall bill was developed after determining that the current NIH research program needed a major expansion, and the bill's program was designed with extensive involvement of premier Parkinson's researchers nationwide.

If Parkinson's research is so deserving of further investment why hasn't it already been provided?

The history of federal research funding shows that diseases receiving the most public attention also receive the most funding support. For a variety of reasons -- including the disabling nature of Parkinson's -- Americans have not been made aware of the terrible impact of Parkinson's, and they have not urged that their tax dollars be allocated to help cure it. The Udall bill is finally attempting to change that.

What is the status of fetal tissue research as it affects Parkinson's?

Since the lifting of the federal ban on support of this research in 1993, medical science has made significant progress in using fetal neural cells as a source for implantation to replace the cells lost to Parkinson's. The results are now beginning to benefit other diseases such as Huntington's. All research conducted using fetal tissue is done under the strict guidelines provided in a 1993 federal law, which requires a strict wall of separation between the decision to undergo an abortion and the use of aborted tissue. It prohibits discussion of fetal tissue donation until after an abortion decision is made, and outlaws payment for tissue donations or a donation to any person known to the donor. This research is only of several promising areas leading to a major therapeutic breakthrough, but it is a significant one.

If this research is successful. won't success begin to encourage abortion?

No. As advances in fetal neural tissue transplants have occurred, parallel advances also have been made in alternative sources of tissue, including non-human sources (such as pig cells), cell lines arid genetically engineered cells. By the time the research produces an effective therapy ready for a widely-available use, those alternative sources are expected to be available as well. The fetal tissue research is helping develop alternatives that will render the need for aborted tissue obsolete.

Isn't it possible to use tissue from spontaneous abortions. so that elective abortions are not necessary?

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Last modified: February 19, 1999