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In a message dated 98-03-26 20:53:35 EST:

<<
 >National Parkinson Foundation, Inc.
 >
 >Written Testimony of
 >
 >Muhammad Ali
 >
 >and
 >
 >Abraham Lieberman, M.D.
 >
 >before the House of Representatives Commerce Committee
 >
 >Subcommittee on Health and Environment
 >
 >"New Developments in Medical Research"
 >
 >2123 Rayburn House Office Building
 >
 >March 26, 1998
 >
 >
 >
 >Mr. Chairman and distinguished members of this Subcommittee, my name is
 >Abraham Lieberman. I am Medical Director of the National Parkinson
Foundation
 >and Executive Director of the Muhammad Ali Parkinson's Institute in Phoenix,
 >Arizona. I am accompanied today by my friend and patient, Muhammad Ali who,
of
 >course, needs no introduction, and Mr. Nathan Slewett, volunteer Chairman of
 >the Board of the National Parkinson Foundation, whose worldwide headquarters
 >are located in Miami, Florida.
 >
 >We are here at the invitation of Chairman Bilirakis whom I want to
personally
 >thank and commend for holding these hearings on "New Developments in Medical
 >Research." Muhammad has assured me that he would have preferred to speak
 >directly to you today, but his Parkinson's disease has robbed him of what
was
 >one of his most prized assets....the ability to speak with resonance. I can
 >assure you, however, that his thoughts and muted speech remain as eloquent
as
 >ever.
 >
 >We are here today for two principal reasons. First to enlighten this
committee
 >and thereby the United States Congress, on the pathology of Parkinson's
 >disease, at least what we currently know about its causes, course and
 >treatment. Also, we would be remiss if we failed to use this opportunity to
 >demonstrate once again, why more research resources are needed NOW to take
 >advantage of some of the fantastic scientific breakthroughs that are at our
 >door step.
 >
 >Parkinson's disease (PD) affects more than a million Americans, and costs
the
 >United States more than five billion dollars a year in Medicare, Medicaid
and
 >nursing home outlays. In addition it costs each patient five thousand
dollars
 >a year for medications, doctor's visits and hospital stays. As a society we
 >spend ten billion dollars a year for PD, without considering the indirect
 >costs of lost income, missed opportunities and family disruptions. The ten
 >billion dollars results in treatments that provide only temporary relief
 >because there is no cure. No Parkinson's patient, no care giver, no doctor
is
 >happy, nor considers the ten billion dollars well spent.
 >
 >At the time of diagnosis, every patient had probably had Parkinson's disease
 >for at least four years. Based on the time between disease onset and
 >diagnosis, it's estimated there is at least one person who is undiagnosed,
for
 >each patient who is diagnosed. In other words, there are probably two
million
 >Americans with PD: 2% of the population over age 60, and 4% over age 70.
 >
 >The degeneration of nerve cells in Parkinson's disease is associated with a
 >particular particle, called a Lewy body, in each dying cell. Based on the
 >observation that the Lewy body is a marker for PD, and that 10% of the
 >population over age 60 years have Lewy bodies without symptoms of PD, it's
 >estimated that at least ten million Americans may develop PD, if they live
 >long enough. Lest the young be sanguine, and relegate PD to senescence, 15%
of
 >all patients who develop PD are less than 50 years of age. And the disease
 >appears in adolescence. Given the increased chance of developing PD with
 >increased life, what is the point of conquering cancer, heart disease,
stroke,
 >and diabetes if the end result is a population, 10% of whom have PD and 10%
of
 >whom must care for the afflicted or live in dread of being afflicted? Public
 >health, preventive medicine, and environmental safety are laudable goals
only
 >if the resultant increased life span is satisfying and free of the plague of
 >Parkinson's disease.
 >
 >Parkinson's disease results from the death of pigmented nerve cells in the
 >substantia nigra, part of the basal ganglia, the region of the brain between
 >the hemispheres, the creators and initiators of thought and movement, and
the
 >brainstem and spinal cord, the executioners of movement. In the past ten
 >years, as a result of developments in molecular biology, genetics,
 >neurophysiology, and computer science, the mystery of cell death is being
 >unraveled. It's known that some neurons are more susceptible to dying than
 >others, that their death is associated with both external (to the cell) and
an
 >internal (within the cell) generation of free radicals and this, in turn,
may
 >be associated with the deposition of iron. Sadly, the end result of
 >Parkinson's disease is that the human brain, the highest expression of
 >creativity--rusts.
 >
 >Whether the cause of Parkinson's disease is an externally produced toxin, AN
 >internally generated poison, a defect in the cell itself, or an abnormal
gene
 >is the now the subject of intense thought, debate, study, and
experimentation.
 >A debate that, as recently as ten years ago, was conceptually impossible and
 >scientifically unprovable. Unraveling the mechanism of cell death in PD,
will
 >increase our understanding of the more complicated, disintegrative
mechanisms
 >in Alzheimer's disease and the aging process itself.
 >
 >Since the introduction of levodopa in 1967 it has been the mainstay of
 >treatment for PD. Levodopa is combined with a dopa decarboxylase inhibitor,
to
 >facilitate its passage from the gut. There are several drugs including MAO-B
 >inhibitors, COMT-inhibitors, and controlled-release levodopa preparations
that
 >enhance levodopa's activity. There are several other drugs, dopamine
agonists,
 >bromocriptine, pergolide, ropinerole and pramipexole, that activate the
 >dopamine receptors.
 >
 >Recent discoveries have shown that nerve cells, heretofore considered
 >incapable of regenerating themselves, are able to do so. This regeneration
 >occurs under the influence of trophic, or growth factors, small molecules,
 >poly-peptides, produced in the brain. There may be hundreds of trophic
 >factors, each one specific for one or two nerve cells, so as to limit
 >uncontrolled growth, and its resultant tumor induction. Several factors have
 >been identified, characterized, engineered and tested in animal models of
PD.
 >One of them glial derived neurotrophic factor (GDNF) is undergoing clinical
 >trials for Parkinson's disease. Knowledge of the mechanism of action of
 >trophic factors will increase our understanding of cell death and aging and
 >will lead to treatments heretofore thought possible only through immersion
in
 >the legendary and elusive, "Fountain of Youth." The challenge is to
determine
 >which trophic factors are relevant to which nerve cell, and which disease,
to
 >deliver the factors into the nervous system and target them to the relevant
 >cells. These are complex engineering problems, but ones, as with the World
War
 >II Manhattan Project which produced the atomic bomb, are within the realm of
 >being solved with our present technology.
 >
 >Within the past ten years neuroanatomists, neurophysiologists and
 >neuropathologists have distinguished differences between the caudate nucleus
 >and the putamen, the two components of the striatum. They have separated the
 >ventral from the dorsal caudate, and ventral from the dorsal putamen, and
have
 >identified several cell types within the striatum. Meanwhile the
neurochemists
 >and molecular biologists have further characterized the striatum's nerve
cells
 >by co-localizing them with one or more of several neurotransmitters. The
 >significance of the striatum's newly discovered external geography, and
 >internal architecture is being scrutinized in PD and heretofore unknown
 >relationships are emerging. While the external characteristics of the
striatum
 >were being studied, the more important and challenging task of understanding
 >the internal biology of the individual cells has proceeded simultaneously.
 >Specific proteins, and poly-peptides are produced in specific cells, and the
 >ability of a cell to produce a specific protein defines the individuality of
 >the cell. The ability to replicate, amplify or inhibit these interactions
will
 >have consequences for our health and our civilization as profound, and as
 >monumental as splitting the atom.
 >
 >Thirty percent of Parkinson's disease patients develop a dementia which has
 >many similarities to Alzheimer's disease. A smaller portion of PD patients
 >develop a dementia, at an earlier age, called Lewy-body dementia. Whether
the
 >dementia of Parkinson's disease  and Alzheimer's disease are different, or
the
 >same is now under intense investigation. Approximately 50% of Parkinson's
 >disease patients become depressed during the course of the illness and
require
 >counseling and/or anti-depressant medication. In some patients the
depression
 >is a reaction to the PD, but in most, depression is an intrinsic component
of
 >PD. Unraveling Parkinson's disease will lead to a better understanding of
the
 >affective disorder.
 >
 >At the level of the human brain, as distinct from the human spirit, the
 >formulation, initiation and execution of a thought, is conceptually similar
to
 >that of a movement. An idea recognized in the Bible by the sages who
described
 >the consequences of a stroke by saying, "If I forgot you, Jerusalem, let my
 >right hand lose (not its strength or power) but its cunning." We are in the
 >midst of a revolution in understanding the brain. The centerpiece of this is
 >Parkinson's disease. With increased financial support from the government,
 >foundations and private donors, the scientific community will unlock the
 >mother-lode of information contained within the Parkinson brain that will
 >banish these diseases and ameliorate the aging process itself.
 >
 >Mr. Chairman, as I am certain you have witnessed, the Parkinson's community
 >has mounted one of the most visible and effective grassroots campaigns in
 >history to secure additional needed funding for Parkinson's research. The
 >culmination of this monumental effort was last November's passage of the
 >Morris K. Udall Parkinson's Research and Education Act of 1997. When the
Udall
 >Bill was signed into law, both the President and Vice President specifically
 >recognized its intent as a very essential part of the Labor/HHS
appropriations
 >Bill in which it was included as an amendment. Also recognized by the
 >President was the bill's principal sponsor, and your colleague, Congressman
 >Fred Upton who was on hand to witness its signing.  It was truly a great
 >moment.
 >
 >I am proud to say that the National Parkinson Foundation regarded the
passage
 >of the Udall bill as its highest legislative priority and lobbied
aggressively
 >for more than two years in favor of its enactment. Muhammad appeared last
 >April on behalf of the NPF before the House Appropriations Committee to urge
 >the Udall bill's passage and requested that that committee appropriate the
 >funding called for in the Udall Bill after its enactment. That has not yet
 >happened.
 >
 >The Morris K. Udall Parkinson's Research and Education Act is authorizing
 >legislation. It does not provide for the funding that the entire Parkinson's
 >community has worked tirelessly for, and fully expects will hasten the cure
 >for this dreaded disease. Today, the Congress has before it the
responsibility
 >to fund the Udall legislation making this victory a full one rather than a
 >hollow one.
 >
 >Some have said that the Udall legislation provides for up to $100 million
for
 >Parkinson's research. The National Institutes of Health have recently
released
 >numbers attributed to Parkinson's disease research that will soon exceed the
 >$100 million provided for in the Udall legislation. This makes it appear
that
 >additional funding for Parkinson's research is not necessary.
 >
 >This conclusion is UNACCEPTABLE! Whatever the National Institutes of Health
 >claims to be spending on Parkinson's disease is based upon an analysis that
I
 >am personally not in a position to challenge. However, the entire
Parkinson's
 >community believed that the Udall Bill would authorize at least $65 million
 >additional dollars for Parkinson's disease research. This figure is based
upon
 >the funds leading Parkinson researchers tell us are needed to dramatically
 >advance our finding a cure or significantly improved treatments for
 >Parkinson's disease.
 >
 >The Parkinson's community has sought, and believes it has found a
sympathetic
 >and supportive ear in Congress. Parkinson's activists nationwide have
 >sacrificed some of the best remaining years of their lives advocating a
 >substantially increased federal investment in Parkinson research so that a
 >cure may be found in their lifetime. To say to them now that there is no new
 >money for Parkinson's disease is also unacceptable. If Congress is to honor
 >the intent of the Udall Bill it must appropriate $100 million of additional
 >funds for Parkinson's research for each of the next three fiscal years.
 >
 >The NPF recognizes that federal funding is one of several ways to support
 >medical research. Therefore we have taken unprecedented steps to increase
the
 >role of the private sector in finding a cure for Parkinson's disease. The
 >National Parkinson Foundation is the largest voluntary health agency
 >representing the interests of people with Parkinson's disease. It supports
51
 >NPF Centers of Excellence worldwide. The research conducted by these centers
 >is cutting edge and the grants it awards are subjected to a peer review
 >process similar to that of the National Institutes of Health. It also
provides
 >a myriad of patient services including physical therapy, occupational
therapy
 >and speech therapy to persons suffering from Parkinson's disease.
 >
 >Furthermore, the NPF works closely with NIH in three ways. First, we
provided
 >needed additional funding to the National Center for Human Genone Research
 >when they were looking for the gene that was believed to cause a form of
 >Parkinson's disease. Within a short time, that gene was indeed located as
 >highlighted in the President's State of the Union Address. Secondly, we are
 >cooperating with NIH in providing "bridge" grants to those researchers whose
 >grant applications were of high scientific merit, but fell just below the
 >funding level. And finally, the National Parkinson Foundation has just
 >designated the Parkinson intramural research facility at NIH as a NPF Center
 >of Research Excellence.
 >
 >Thank you, Mr. Chairman and members of this distinguished committee for the
 >opportunity to appear before to talk about Parkinson's disease. Muhammad and
I
 >have dedicated our lives to finding a cure for this disease and seek your
 >help.
 >
 >I will be happy to answer any questions that you may have for either
Muhammad
 >or me.
 >

  >>
 Hello, all you PWPs. I thought it time to resend this.

Regards,
WHH 54/18

PS : The Mo-type accomplishment of which I am probably most proud is getting
my neurologist to write his Senator