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Numbers are important, but exaggeration can get us into trouble. My comments are marked XXXXXXXXX XXXXXXX. Ivan Suzman on June 5 said: Subject: P.A.N. Petition UNDERCOUNTS PWPs? This is a controversial message- but it is necessary for me to get this off my chest. I take issue with the PAN Petition's accuracy. Numbers are VERY important. Why is the PWP number only 1,000,000 in the Petition?I think that the NPF and the APDA both conservatively estimate 1.5 million American PWP's. Please help if I am incorrect. Even 1.5 could be a substantial undercount. Many, many sub-populations of unknown and UNDIAGNOSED PWP's, such as the instituionalized, the high-rise elderly, the poor, the rural, the ghettos and barrios of people of color, and those who hide in shame of their symptoms are well-known to exist. +++++++++The most recent "official U.S. government estimates" I have are 1990 figures from the OFFICE OF TECHNOLOGY ASSESSMENT [a joint group, now defunct, of the combined House of Representatives and the Senate] in "NEURAL GRAFTING - REPAIRING THE BRAIN AND SPINAL CORD" page 3. ----------------------------------------------------------------------- Neurological disorder Prevalence Alzheimer's disease 1 to 6 million Stroke 2.8 million Epilepsy 1.5 million Parkinson's disease 500,000-650,000 Multiple sclerosis 250,000 Spinal cord injury 150,000 Brain injury 70,000-90,000 [totally disabled from head injury] Huntington's disease 25,000 Amyotropic lateral sclerosis 15,000 NOTE: Prevalence is defined as the total number of cases of a disease estimated to be in existence in the United States at any given time. -------------------------------------------------------------------- Numbers get very fuzzy. If we count the undiagnosed, should we also deduct the false PD diagnoses which are estimated at almost 30% of PD diagnoses? I have tried in vain to find some good hard numbers, but there are none available to my knowledge. I tried to get Sinemet production numbers from DuPont and was turned down flat. PD is not a reportable disease so there is nothing in the public records. +++++++++++++++ There are also the unknown numbers of pre-symptomatic PWP's who exist, in the absence of a standard dopamine deficiency test before VISIBLE symptoms appear. The P.A.N. petition says there are 60,000 new cases per year in the USA. That means that every 16 and two-thirds years, the entire current crew of PWP's would all have to have died off.(60,000 x 16.67= 1,000,000) +++++++++ The math here is right, but it one should think in terms of averages. There is not a 100% turnover every 16.67 years. If the average age at diagnosis is 59 years [there are no hard figures for this either], that would indicate an average life expectancy to age 76 which on average isn't too bad.. ++++++++++ Can P.A.N. 's petition numbers be changed before copies are submitted? They are almost certainly doing us a Disservice. +++++++++ The APDA, the PDF, and the NPF are special interest groups and want to use numbers that make the cause seem more relevant to more people. Just because they use the higher numbers does not make those numbers right. The figure I use is a million plus or minus a half-million. That number prompts some readers and listeners to ask why I don't know how many of us there are. The mere fact that we don't know may prompt some to say that something should be done to identify the size of the problem. That could be a help to us in itself.