Wednesday, April 3, 2013

When Patients Do Lobby-Work For Pharma

David Healy:
… Quite innocently some decades ago a network was set up by Silvio Garattini among others to investigate rare diseases. This later gave rise to Eurordis, an organization to speak on behalf of patients with rare diseases.

An organization of patients and by patients and for patients sounds like a wonderful thing but far from being a sanetocracy it has turned out to be an insanetocracy.

As it happens as of 2011 Eurordis took funds from 38 different pharmaceutical companies. These only amounted however to 22% of their income. Financial conflicts are not really the issue – they could survive without the money. It’s something else that keeps them tied to the Corporation. This is the patient group for whom pharmaceutical solutions are a lifeline. They are more committed to the interests of the pharmaceutical industry than are any of the employees of any of the pharmaceutical companies.

 They can be absolutely depended upon to read the runes right and come out with a strong industry position, making it possible for industry representatives to sound relatively accommodating to others in contrast …
The ME/CFS community should take notice – especially those lobbying for Ampligen – not to become unpaid pharma shills.
Posted by Tony Mach Posted on Wednesday, April 03, 2013
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