Bill Turrene, Thanks for posting the text of Dr. Lieberman's (and Muhammed Ali's) testimony before Congress. I have been clicking the channels on TV trying to see if was on somewhere. All I was able to find was a bit that showed Ali and Dr. Lieberman coming into the meeting. This is especially important to me as I not only have PD, but Dr. Lieberman is also my Doc and Ali and I are from the same home town . That should certainly mean I'll be first on the list when they find the CURE doesn't it? LOL :-) . Hangin' on the ropes, waitin' for the bell to ring. Bob Chapman 65/2 [log in to unmask] Sun Lakes, AZ -----Original Message----- From: BTurenneJr <[log in to unmask]> To: Multiple recipients of list PARKINSN <[log in to unmask]> Date: Thursday, March 26, 1998 2:58 PM Subject: Dr. Lieberman's testimony before Congress: 3/26/98 >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. >