Fiona & Charlie
It is somewhat true what you say Charlie, that "we're a big (and growing) profit center." And Fiona is somewhat right when she says "wouldn't they rather maintain that population on "medicine" so they keep them as lifelong consumers rather than cure them." BUT, has anyone taken the initiative to sit down and estimate (even "guess-timate") the financial impact of 80 million hitting the Medicare roster at once?!? Big pharma isn't getting rich on staple drugs that have long ago lost patent rights - almost every PD drug is now generic. And carbidopa/levadopa (i.e. Sinemet hereafter referred to as L-dopa) is a radically effective treatment. What other treatment (besides the recent DBS) turns a severely disabled PWP into a walking, talking, decently functioning person within minutes? That's why there hasn't been a market for PD drugs. And there are so many risks in surgtical, invasive intervention that right now is thriving, but what does it do long-term?? I contend that Big Pharma is not the only problem in answers for this problem - our own government is to blame (and I am talking BOTH parties).

Imagine with me for a moment . . . let's say half of those babyboomers (40 million) end up getting Parkinson's. Talk about a socioeconomic nightmare! Not only do you have to consider the cost of medication for this 40 million, but many of them will stop being productive citizens, unable to gain supplemental income after retirement. Most 60-65 year-old citizens are not a liability to the economy, but are an asset.

Charlie, you're on the right train of thought. If we got just 1 million people convinced that they need to demand this age-related illness be taken under control by marching on Capitol Hill, what a sight that would be! But first, we need to get our act together. Start with getting someone to sit down and get some real numbers. PAN has introduced legislation to initiate a regisitry with the Multiple Sclerosis Society, so there's a start. But the European Parkinson Society has already done a lot of work with WHO to come up with a count of 6.3 million worldwide. Why don't we continue with whatever they were doing? And the Social Security program in itself was set up as disability program, not a retirement system. I cannot fathom why the government hasn't been working on this long ago. And this 40 million must be treated with more than medication - they need physical and occupational therapy, psychological or psychiatric services, ER visits to sew up slashed heads or gashes from falls, and will most asuredly need long-term care. It is this message that needs to be shoved into the faces of our legislators. When you talk dollars - coming from people's own pockets to care for someone else, they tend to listen.

I'm not sure the answer lies with the organizations in implementing this. Granted, we WILL need their help, but this is a patient problem. And it will take empowerment of the patient and theiri families to have real impact on this enormous problem. I don't want this to go through a political party process, or it is doomed to be weakened. This needs to gain the caliber of Susan G. Komen Breast Cancer Foundation. How did one patient rise to the occasion and get as much out there to John Q. Public as she did???? How did the "pink ribbon" get such widespread attention? You can start by looking here: http://www.komen.org

I know a handful of patients cannot "do" this alone. But some of the really patient-centered orgs and drug companies (and there ARE some) could help us. I'm too far along to do it alone - but I sure am willing to use what energy I have to see something like this to fruition.

Whew! I've worn myself out just thinking about this! What next?
Peggy