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TESTIMONY OF JOAN I. SAMUELSON PRESIDENT, PARKINSON'S ACTION NETWORK Hearing of the House Appropriations Committee Labor, Health and Human Services Subcommittee April 24, 1997 I am one of a million Americans afflicted with Parkinson's disease. 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 1998 budget of the Labor-HHS Appropriation must -- yes, must include a substantial increase for Parkinson's research funding, along the lines of the $ 100 million authorized in the Udall Parkinson's Research bill now pending before this 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. 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, backpacking and the piano. 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 is 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. 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 the Senate unanimously passed the Morris K. Udall Parkinson's Research Act, which would authorize the long overdue expansion of Parkinson's research, bringing annual research funding to $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. The Udall bill garnered 241 House co-sponsors in the 104th Congress, and is back to be enacted at the earliest possible date. 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, continueto 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. There is another important reason the Congress must increase Parkinson's funding in 1998. 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, Alzheimer's, 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 may begin to self-destruct after assaults from one or more of those causative factors. 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. But at every turn, we are told there just isn't enough money in the Labor-HHS allocation to fund an improvement in Parkinson's research funding. 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, or Attorney General Reno? And what about the unknown, invisible Americans I represent today? The 1998 Labor-HHS appropriation must include a major increase in Parkinson's research funding --at least double or triple the $30 million now being spent -- 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 must be passed and funded in FY 1998.