The drug companies have spent many millions in recent years to create and take over patient groups and sites. They directly or indirectly control many if not most of the web sites and patient groups for various types of diseases. When a newly diagnosed patient uses a search engine to find information and support groups for a particular disease they will often end up on a site or in a group controlled by a durg company. Because of the many loopholes in the law drug companies are not required to disclose in all cases who they are paying money to. They can make payments for everything from individual patients (who act as informal and undisclosed lobbyists who participate in and operate patient support groups) to complete control of various types of support and patient groups and front organizations who receive millions a year. There has always been a tremendous amount of payola in the drug and healthcare industries. Through control of various groups and sites the healthcare industry makes certain they control and monitor patients from the day they are diagnosed to the extent it is possible to do so.  
 
This group and the other groups and sites that are operated by CMLHope.Com have always been paid for by my family for nearly 10 years now. We have never accepted any drug company money, other healthcare industry money, or funding from any other sources.  This group was involved in some publicity including a New York Times article in recent years which exposed the problems that many desperate and indigent CML patients have had in trying to obtain Gleevec. This group has always tried to be independent and objective. The first priority in this group has always been patients and their families. Many of the problems this group has had in recent years involved a small handful of people who would attack Sandra Landels, me, and others for posts they considered "political" and "unacceptable" because they were from a pro-patient and pro-consumer point of view which was contrary to their interests and point of view.     
 
Rob      
 
Company's Vow to Donate Cancer Drug Falls Short
 
----- Original Message -----
Sent: Wednesday, March 23, 2005 9:59 AM
Subject: [CML] Re:Astroturf/fake patient groups

Rob,the information regarding the drug companies infiltrating and/or creating patient advocacy groups is quite chilling in my opinion.  Does this mean that our support group or CML advocacy groups  could have pharaceutical ties? I have always heard or read about drug company reps"lurking" on these sites but these articles seem to suggest that people might be paid to represent the companies interests.  What is your take on these issues?  Thanks for any information you can provide.  Cynthia Bates Schaefer


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