Patient Advocates Targeted with Unwarranted Criticism

A study in the current issue of the New England Journal of Medicine, dings patient-advocacy groups for taking funds and engaging with experts from biopharmaceutical and medical device companies. It’s an unfortunate (though familiar) drumbeat, insinuating – though not proving – a conflict-of-interest because money is involved. Guilty until proven innocent – once the charge is made – is hard to defend against. Having worked with more than 1,500 patient advocacy groups in 26 countries for more than 40 years, I can. The late Henreitta Aladjem, founder of the Lupus Foundation and the first advocate to visit me after my appointment by President Reagan would give me plenty of ammunition, as would everyone who testified when I was the Chairman of the Commission on Rare Diseases and the many groups I have met since. I remember each one. Their stories are compelling and the groups they created are doing important work despite daunting challenges. Their resolve and sense of independence is fierce. They take companies to task far more often than you might think about how studies are conducted, about whether patient voices are heard and, yes, about price. The NEJM publication, and subsequent news reports, strike at the heart of their integrity and the integrity of everyone who works for and with them. This is unwarranted finger-pointing, especially since it is not based on all the facts. I’ll address one error in particular: the percentage of an organization’s budget attribu...
Source: Disruptive Women in Health Care - Category: Consumer Health News Authors: Tags: Uncategorized Source Type: blogs