I share your frustration as well. I said this quite awhile ago. My feeling is the L-dopa based therapy is a cash cow for big pharma. There really isn't any incentive to look farther than their own pockets right now. Let's face it, the patents may have run out on the initial design, but there are many smaller pharma companies cranking out generic replacements. The big companies still benefit by supplying the raw materials to the smaller manufacturers.

The cost to produce these medications is also quite low because there are no research and development costs associated with it. All they do is squeeze out the recipe into their pill form, slap their own patent on it, and then market the medication to the doctors who prescibe it.

Regarding a march on Washington. It is quite do able. A small group of PALS and CALS (People with ALS and their Care givers), marched on Washington last year regarding IPLEX. Team IPLEX as they are know as, organized this along with some television and newspaper coverage. This caused enough embarassment for the manufacturer to allow the drug to be available in the US. Surprisingly the company was able to resolve its patent dispute, and the drug was made available on a limited basis for trials.

Hmmm.... Getting the squeaking wheel oiled becomes a priority when it squeaks loud enough to get in their face. Their battle isn't over yet as the FDA and the big pharma companies involved put up different hurdles to discourge these poor PALS and CALS. But these people don't give up easily. What else do they have to fight for? Their lives!

Getting the PDF and the MJF involved won't happen easily. They're taken care of way too well by big pharma and other influential people. If they were to make waves and squeak too loudly, they would lose the very hands that are feeding them. After all, a big tax write-off for the big pharma companies is a wonderful thing to help protect their bottom line as they suck the money out of the patients.


Anyhow, not to drag this thread too far off topic, if anyone is interested in doing a march, I am willing to help out. I have contacts within the graphics industry to help us with professional looking and designed T-shirts, and other goods. What we would need to do is come up with a game plan, and stay focused on completing the tasks needed to get the march coordinated on a particular day/weekend. This means arranging for permission with the city, hotel and transportation to and from the site, and many other things necessary to make the march happen.

John