At 1:13 PM 11/17/97, Stephen Koepfer wrote: >Dear Members, > My niece is doing a senior high school research paper in Economics. She >has chosen to describe the economic impact of Parkinson's Disease. > Does anyone know of any studies, research or the like that addresses >this subject. > Any help would be apprciated. Please respond to > > Stephen Koepfer , 57/12 ([log in to unmask]) > > THANKS :-) > Steve Steve: Here is a letter that is kind of a compendium of a number of individual pieces I compiled over the past few years. If your neice has any specific querstions, please send them and I will try to fill in. Bob Dolezal May 17, 1996 Senator Jon Kyl 702 Senate Hart Office Building Washington, D.C. 20510 Attention: Tom Alexander, Legislative Aide Dear Tom: It was good meeting with you last week to seek Senator Kyl's support for the Morris K. Udall Parkinson's Research and Education Act. Your questions were pertinent, and your request for additional cost savings data to present to the senator was reasonable and valid. I believe my responses are reasonable and valid as well. I hope you share that belief when you have finished reading them. Population We don't know the Parkinson's population in America. No one has taken a census. Nonetheless, for a number of years NIH consistently estimated the Parkinsonian population of this country at 500,000. Recently it has cited "up to 1.5 million" as a possibility. Other analysis indicates even this number may be below the true total. Whatever the current number, as the "Baby Boomers" grow older the Parkinsonian population will skyrocket. Here is the Census Bureau's numbers, with emphasis on the 55 and older population: Pop. 55Yrs. % of the Pop. %of Pop.55 Year U.S. Pop.(mil.) &Older(mil.) Increase55&Up &Older 1995 263.4 54.9 - 20.84% 2000 276.2 59.0 32.0% 21.36 2005 288.3 65.9 57.0 22.86 2010 300.4 74.6 71.9 24.83 2025 338.3 102.6 73.9 30.33 Notice the increasing rate of growth projected in the "55 and older" population. Four years from now almost one-half of our population growth will be "55&Older." By 2010 almost three-quarters will be in that category. What is significant about age 55? Fifty-seven is the average age of diagnosis for Parkinson's. As the growth of population in this age group accelerates, the incidence of Parkinson's disease in America will also accelerate. A recent study in the New England Journal of Medicine presented pertinent data on a sample of East Boston residents over 65. Applying data from that study to the American population, an estimated 2.2 million Americans over 65 have PD. Also, the incidence of "Parkinsonism" would double every ten years in that same age group. Separately, Dr. Erwin Montgomery, a reknowned University of Arizona neurologist specializing in PD, estimates some 2 million plus Americans currently have PD. By 2025, he projects a Parkinson's population at 3.7 million. For this analysis, let's assume that some 3% of Americans over 55 are victims of PD, recognizing that while this number may be somewhat high it serves to compensate for the estimated 40% of PD patients who are under 60. Costs Total annual cost of the disease is said by NIH to be about $6 billion. At 500,000 Parkinsonians, that's only $12,000 per patient, and at 1.5 million, $4,000. Either cost is fiction. Dr. Ole Isacson, a noted neuroregeneration researcher at Harvard, estimates that PD costs the nation between $31 billion and $56 billion annually. On a micro scale, in the early stages of a study designed and undertaken byThe Parkinson's Action Network to identify specific disease-related costs, the average for fifty-two Parkinsonians approximates $46,400 per person (see the enclosed "Cost of Parkinson's' Summary"). For the sake of simplicity and to be conservative, let's call it $40,000. Applying the 3% incidence rate and a constant $40,000 cost per capita to the growing American population over 55 through the year 2025, and the numbers validate Dr. Isacson's estimates: Pop. in Millions Cost in Year Over 55 w/PD $Billions 1995 54.9 1.65 $65.9 2000 59.0 1.77 70.8 2005 65.9 1.98 79.2 2010 74.6 2.24 89.5 2025 102.6 4.10 164.0 Whether these costs are met privately or through the government is only a matter of bookeeping - they are ultimately borne by all of us. Savings through Therapies Delaying the severe symptoms of the disease through improved therapies will save society considerable money. Within one year of diagnosis the typical PD patient loses his job. And, odds soon double that he will fall, causing increased disability, even his eventual death. As the illness progresses, in spite of treatments currently available, he loses more and more of the human capacities we typically take for granted. When all therapies fail, he may go on, in a vegetative state, for many years, imposing pain for family and friends and a financial burden on society. In the latter stages of the disease, if he can think, he can't communicate those thoughts. In fact, he can't do a thing for himself, not a thing. He is a prisoner encapsulated in a totally useless body and, most cruelly, with a mind that may still work. If Dr. Isacson and other specialists are correct, and new and improved therapies are developed that alleviate symptoms or delay the disease, immense savings will be achieved. To illustrate, assume that, under Udall funding, savings would not begin to accrue until the third year, and then would be rather modest booth in the number of patients and per patient cost savings. Even with this guarded optimism, the outlook for a significant and early "return on investment" from Udall funding is terrific. If during the third year - because promising therapies now being developed could be accelerated with additional funds - a mere one hundred thousand people could stay on the job one additional year (average $18,200 each), keep assisted living or a nursing home out of their lives for one year (average $8,800), and not require any "'Dis/SSI/SS" (average $11,200) for a year, savings of $1.82 billion, $.88 billion, and $1.12 billion, respectively, would accrue to the national economy. The projected $70.8 billion cost to the nation in the year 2000 would be reduced by almost $4 billion in the third year of Udall funding. That's a return of $4 billion on $300 million - 13,333% - over three years. Unrealistic? Not at all! The experimental drug I am taking has delayed my departure for places unproductive for at least a few years. It is clear that, if the research dollars proposed under Udall are authorized, appropriated and invested wisely, even an annual return of 13,333% may be conservative! Earmarking Your explanation that the senator is not fond of "earmarking," and has voted against measures on that principle, got my attention. The Udall bill may be "earmarking," but if it is I'd like to point out that it is so only because research in PD has been, and is to this minute, so terribly underfunded. As evidence, please look at the three enclosed graphs. Graph 1 shows the amount of NIH direct research funding in FY91, by disease, for six selected diseases. Graph 2 shows the incremental dollar increase in direct funding in the FY95 budget over that in the FY91 budget. Graph 3 shows the percentage increase for direct research funds between those years, by disease. Parkinson's, with the tiniest base to start with, continued to see the gap widen. PD funding had the lowest percentage increase among the six diseases. Last in FY91, a more distant last four years later! And the per patient numbers are just as pitiful: $26 for Parkinson's, $1,069 for AIDS, $295 for cancer - but, I left that data with you. If this doesn't show that we've been underfunded, too much and too long, please tell me how to prove it. Perhaps this condition is partially our fault - the Parkinson's community has not done the effective job of lobbying, both in the Congress and with the American people, that needs to be done. Maybe it is because "people don't die from Parkinson's," a common allegation even in medical circles, but seldom believed among friends and family of a late Parkinsonian. Or, maybe it is because Parkinson's has been indelibly ingrained in many minds as a disease of stumbling old people whose time has come to fall by the wayside. I don't know. But I do know that this sixty year old is not prepared to cash in his chips. Nor are the many superior people I met while in Washington, most younger than I, who are courageously fighting this insidious disease. They, and I, have faith in the research people who say - not for self-aggrandizement but because they truly believe it - that a relatively insignificant infusion of funds would result in absolutely monumental results, even a cure. "Earmarking" may be the technical term that applies to the process, but wouldn't "catching-up," or "equalizing," be a more accurate description of the result? Other Data Other pertinent information concerning the disease was left with you. But if there is anything lacking, anything at all that will help convince Senator Kyl of the fiscal and human validity of our cause, we will do all in our power to provide it. I appreciate your time,Tom, and the genuine interest you have shown in our request. For the tens of thousands of Arizonans with the disease, and their many caregivers and friends, I ask that Senator Kyl join Senator McCain, and Representatives Kolbe and Pastor, to honor the man and his legacy, and become a co-sponsor of the Morris K. Udall Parkinson's Research and Education Act. Sincerely,