Sunshine and Advocacy Groups

Another recent paper in American Journal of Public Health sheds some useful light on the problem of health advocacy groups getting funding from Pharma (subscription required). The Rothmans and their Center on Medicine as a Profession at Columbia have written a number of sterling papers, so I am sorry to have to add a couple of reservations to my review of their new paper.

At issue here are the patient advocacy organizations, which we docs when grousing among ourselves sometimes call "disease of the month clubs" while acknowledging all the great work they do in providing support and services to patients and their families who feel overwhelmed with diseases like cancer, muscular dystrophy, and diabetes. The not-so-great work they do is lobbying, which is very good in keeping pressure on the government to fund medical research, but which also risks distorting that research by pushing money into politically popular causes rather than what's most needed or what areas of science are really primed for rapid advance.

In the past both drug companies and advocacy groups have been pretty tight-lipped about how much and what sort of funding Pharma provides for these groups. In HOOKED I described some advocacy groups which were so solely the creatures of the drug firms that they counted as "astroturf" (fake grass roots). More commonly these groups have legitimate grass roots support and really do represent patients and families; but the drug companies for that very reason see them as prime targets for marketing influence. A thousand real patients picketing the state capitol is worth more than a gaggle of drug company lobbyists.

After Congress made a lot of noise about passing a sunshine law (which has now become official until such time as the Republicans succeed in repealing the health reform law), Eli Lilly became the first drug company voluntarily to create a public web database of all their gifts and grants. The Rothmans therefore used this database to compare what Lilly said they gave, to what the various adocvacy groups admitted that they received.

Their results: First, they noticed that Lilly was highly selective in giving grants. If Lilly did not have a drug for your disease, sorry, your organization did not get any grants from them. Comment: Now, I suppose for thoroughness they had to do this step of the study, but really--isn't this a "well, duh"? What part of "marketing" don't we understand?

The next revelation is the real meat of the paper, showing that the websites for these organizations only acknowledged receiving Lilly money a minority of the time; and virtually never say just how much money it was.

Now, this is an important finding, but we also sadly need to qualify it some. I think this study represents a single moment in time, and the times they are a-changin'. The old way of doing business was to keep all this under your hat. Then with Lilly's website, a new trend started, of transparency (under the gun of the Feds no doubt). You'd naturally expect that as more and more companies started to come clean on their payouts, then the recipients of the largesse will start to realize that they look pretty silly if they try to keep this under wraps, and will gradually change their own disclosure practices. And indeed, in recent years groups like the mental health people (NAMI) and the American Diabetes Assn have engaged in some soul-searching about accepting so much industry money--though they have a lot of soul-searching left to do in my humble opinion. So this study will be of little use unless a follow-up is done in a few years to see what the overall trend has been.

I dunno if anyone at Columbia condescends to read this blog, but if they do, I welcome a comment in further defense of the study.

Rothman SM, Raveis VH, Friedman A, Rothman DJ. Health advocacy organizations and the pharmaceutical industry: an analysis of disclosure practices. American Journal of Public Health doi:10.2105/AJPH.2010.300027, epub Jan. 13, 2011.