Glenna Crooks

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 attributable to company sources which, in some cases, is positioned as ill-advisedly large.

Even the largest groups today started small, on someone’s kitchen table and often by people without business and professional skills to make it easier. It is only by dint of their dedication and the hard work of volunteers that these groups were founded and continue to exist at all.

At the start, and along the way, they recognized the value of volunteers implicitly. Rarely, however, did they adequately and accurately capture that value explicitly. Even reporting the number of volunteers or the hours of board meetings tells only a fraction of the story.

Yet, none of these groups would exist without the in-kind, human capital contributions of members, volunteers, community fund raisers, advisory committees and governing boards. Nor would they exist without in-kind contributions of vendors who provide services at discounted rates. Some in-kind contributions come from staff, as well, when they work at below-market wages for “the cause.”

Only one group I know attempted to comprehensively assess in-kind support. When they did, the value of just the Board’s time (at a rate far below their day job’s compensation) was greater than the total financial contributions from five companies. When the value of vendor discounts was added to the Board’s time, the in-kind total equaled the organization’s entire budget.

A few months ago, I might have shrugged-off this article as yet-another example of just-damn-sloppy scholarship work done by academics to inform policy debates today. There are plenty like this one taking opportunistic strikes, this time at advocates who are guilty-by-association with one of todays’ favorite policy and political whipping boys.

A few weeks ago, however, after nearly two years of volunteering my professional skills to a patient advocacy group, I was asked to join its Board and Executive Committee. I agreed. Now, I take this personally.

Advocacy groups don’t deserve unwarranted finger-pointing like this, nor as a Board member, do I.

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