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Anne Rutherford wrote: > Of course drugs were cheaper 18 years ago and I didn't take so much, > but guessing at 5000 a year for 18 years turns into a big wad of cash.> Anne, I have responded to your e-mail as follows (note the changes in #3): WHH FACTS THE PUBLIC NEEDS TO KNOW: #1: (heavy anecdotal/clinical evidence) The PWP does poorly in nonverbal communication. The experts in communication tell us that this is the most important communication. Some have suggested a very high percentage (up to 75%?, even more?) of communication on the street is non verbal The news media has already misinterpreted Mr. Fox's partially masked face. The other day, I heard a tale of having his limo circle the block three times "for his tremor to go away." The next statement was that he was in a somber mood. They have no idea what kind of mood the masked face, soft voiced, non- smiling PWP is in. Who hasn't had to wait for a pill to kick in? Sometimes I got everything back at once. Often, things returned piecemeal. The masked face is a part of this thing. Perhaps now, with Mr. Fox's help, we can get the idea out that our voice is soft and our body language nearly mute. However, that doesn't mean we are not able to communicate. #2 (requires documentation) PARKINSON'S IS *NOT* an "old person's disease" any longer! Excuse me - but _ I _ got MY first, vague Parkinson's symptoms around age 32! The numbers of currently existing Parkinsonian's, nation-by-nation and world- wide are grossly downplayed as is the potential severity of the disease. #3 (anecdotal evidence) The disease spells financial disaster to many if not most sufferers (especially young sufferers) Not all of us are Michael J. Fox's type of Parkie. Many of us live on limited incomes, derived from a Variety of sources - Social Security Disability Insurance (SSDI), Medicare, decreasing savings, alimony, home refinancing, and often MUST rely on financial and personal-time caregiving and charity from family and friends. The medicines are very expensive, and required in copious quantities. It is not unusual for someone to deplete savings buying them. It is not even that unusual to be unable to afford optimal therapy. #4 (public record) The Udall Bill does not have fully committed funding. The PWP community has put in over four years to get $100,000,000,00 committed to curing PD. The recent budget gave the NIH a more than generous amount with which the Director could easily provide the full funding as authorized by the Udall Act (passed into public law in '97). NIH Director Dr. Harold Varmus and Representative (Chairman) Porter share an aversion to "earmarking funds" for specific diseases. Because of this, It is still possible for Parkinson's research projects of 'high scientific merit " to go unfunded. # 5 (anecdotal and clinically documented) Many of the drugs have psychological side effects. As one bounces back and forth between ability to move more or less normally, and feeling like a stone, these abilities are usually accompanied by mental changes They range from over exuberance while "on" to frank depression when "off." Overall mental status changes are also common. The following are often tied to use of a particular medicine: anxiety, depression, compulsive thinking, paranoid thinking, and hallucinations #6 (logic) The problems will get worse as our Population ages. The young onset PWP leaves the ranks of producers and joins the most expensive group of retirees early. Age is a risk factor for getting PD. That mass of humanity known as the baby boomers will start getting larger numbers of PWP as they age. Years of interlocked social policy have set up working taxpayers to support (both disabled and healthy) retirees. . Healthy retirees are much cheaper to support.