As a follow-up to my post yesterday addressing disclosure and health advocacy groups and nonprofits, I have looked into this further online. And it is not that I think that advocates or advocacy groups are corrupt: I think advocates are important. I just think we ought to know if a pain group has huge dollars from Medtronic, Eli Lilly gives to mental health advocacy, or electronic health record suppliers are giving dollars to advocacy organizations or advocates pressing for them. Then, we can listen, keeping that in mind.
I have turned to advocacy organizations for advice sorting out health problems for myself, family, and friends. I’d rather not be caught by surprise that someone might be promoting a treatment, a facility, or a medical device, only to learn later that they have stock options or receive dollars for touting them. I want to see this up front. And it is not so much that I want a pure situation. I am not sure that this is possible. It turns out that I am not the only one out there who has flagged this as worrisome.
In January, Sheila Rothman and coauthors from Columbia University, wrote an article about mental health advocacy groups’ relationships with Eli Lilly in the American Journal of Public Health. Rothman raises important questions about variation in disclosure in relation to mental health advocacy groups. In health policy, we talk about variation as a problem, with overuse, underuse, and appropriate use of science-based practices. It’s a key concept among health reformers who are trying to make medical care based on the best available concept. Variation in disclosure practices needs to be examined and standardized practices need to be adopted for the public’s health
What Rothman reports is that 161 health advocacy groups received $3.2 million in payments from Eli Lilly, yet only one-quarter of those groups disclosed it at all on public websites that we turn to daily in a Google search. Further, only 1 in 10 identified Lilly as a sponsor; not a single one revealed the amount of dollars received. Like Rothman, I am not saying taking money is corrupt, but there should be a transparent way to see the exact dollars that the nonprofit, health advocacy group or patient advocate gets, so that the public and government can decide for themselves.
Rothman is not the only one to raise this issue. You can find articles in the medical literature on this, dating back years. Some bloggers have been critical as well.
My heart goes out to people who have terrible diseases or conditions. I admire people who devote themselves to outreach and organizing stellar programs for patients like them. In the course of caring for themselves, some have started nonprofits dedicated to advancing care. I am not entirely certain, though, that parents or family members can simply say that they are not affected by grants by the drug and device manufacturers.
I am raising this because it is an important issue as I continue blogging. I’ll undoubtedly return to this issue. I am interested in your views on this situation.
I think the problem is that by being coy about the source – and especially about the level of funding – the groups themselves are more or less saying there is something fishy about the industry funding. $20K is a real money for a patient advocacy group.
Over the years, I’ve come to like seeing groups take money from *everybody* in their area instead of just one company. I don’t know whether that all-comers approach really does ensure more balanced treatment of the information—it would be interesting to examine this!—but if a group gets funding from companies that are in direct competition with each other, at least I know it’s not just an extension of one company’s marketing arm.