There was recently an article in the Philadelphia Inquirer about non-profits taking money from big pharma and the effect that might have on the endorsement of drugs. They seem to think it was news that pharmaceutical companies work with disease-specific non-profits.
As someone who spent 14 years working in HIV non-profits, I can say that this story is years old.
I remember an executive management committee of AIDS Project Los Angeles, then the second largest AIDS service organization in the nation, where we debated whether or not to take pharmaceutical support money. Among my colleagues, I was the only hold-out for not taking the money. I made a passionate speech during the meeting laying out my reasons for not taking funding. People got tears in their eyes. Our executive director turned to me and said, "that’s why we keep you around here. But we’re taking the money."
I had been wrong, and he was right. Money from pharmaceutical companies came to the organization in the form of many grants and different forms of support. The agency brought dental services, food, mental health services, case management and dozens of other services. It achieved policy goals. It did not, however, color any of our point of view regarding industry and we remained vocal critics when criticism was called for. There was never a quid pro quo and one was not expected.
So, while there may be desire to ensure that there is never a quid pro quo between patient groups and pharmaceutical companies, those who would have a knee-jerk reaction and call for further regulation in this area need to consider the track record to see if there really is a problem, or if there is only the perception of one. In this era that is quick to blame pharmaceuticals for much, but offer little praise for what they actually accomplish, care must be exercised.
Believe it or not, there are elected officials who prize a headline over common sense. Non-profit patient groups need support. To act for the sake of acting could chill a necessary cash flow that support patients for all diseases. Non-profits who provide them with essential and often life-saving services deserve that kind of consideration.
The practice of funding mental health advocacy with pharma funds is so ubiquitous that it tends to taint all groups unfairly. Perhaps the Inquirer didn’t focus on groups free of pharma dollars because we are so rare … Our small advocacy group focuses on eliminating barriers to treatment of severe mental illnesses, and we accept no funding from pharmaceutical companies (http://www.psychlaws.org/JoinUs/donation.htm). It certainly makes fundraising more difficult, but it is our policy. The Treatment Advocacy Center operates on a modest budget for a national organization, but our lean and mean approach has resulted in many successes.
Most importantly, it gives us credibility. When we publish data showing that abnormalities in brain structure and function in diseases like schizophrenia are inherent in the disease process and not caused by medications (http://www.psychlaws.org/PressRoom/rls_nevertreatedpaper.htm) – nobody can accuse us of being shills for the manufacturers of those medications