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If I think about the evolving situation, I believe there is clearly something wrong with the system, not just in the USA but everywhere.
If I can work out as an semi-litterate in one year (in my spare free time and with the help of others) what is MS (don't say it is all wrong because it is not..), why for heavens sake can't a system like ECTRIMS/ACTRIMS that met in Amsterdam in October 2011 with over 7000 specialists and after 150 years not come up with something consistent and coherent, some plausible explanations?
But can we blame the pharma industry? There are big debates on evolving social reponsibilities of corporate actors.. But at the end of the day, these companies are responsible to their shareholders.
Then, can we blame the clinical sector, the hospitals or the doctors? Perhaps, I am not sure, they've become the victim of more bureaucratization and protocols e.g. to limit liabilities of their hospitals and themselves, whilst craftmanship was lost on the way.
Can we put the blame on public health institutions? As Nigel Crisp said in his book Turning the World Upside Down, public health has been eclipsed by the pharma and clinic sectors since the 1950's. And to an extent the officials may have been submissive, perhaps even because they did neither have the manpower nor the knowledge. That's bad...
So we as patients are faced with a situation where the system failed massively and the failure is persistent. But we can not find a perpetrator. What's worse, we can not even find the button to press to launch the change process so much needed.
I hope you can use the presidential elections to raise visibility of this problem. It occurs to me that the fact that all candidates have or had relatives with MS so close to them can only help you. Good luck!!
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