There is terrific scrutiny given the amount of money drugmakers pay physicians, but what about money funneled toward health advocacy organizations? The Senate Finance Committee launched a probe last year (see here), but now a new study has examined the issue through the prism of what just one drugmaker doles out.
A team of researchers examined the Eli Lilly grant registry data for the first two quarters of 2007 and disclosures made by 161 of the health advocacy groups that there were listed as having received funding. What did they find? Lilly gave more than $3.2 million in grants to HAOs during that six-month period, which amounted to 10 percent of all grants made. But only 25 percent of the groups that received Lilly grants acknowledged contributions on their sites, and only 10 percent acknowleged Lilly sponsored an event with a grant (here is the list of HAOs).
Not surprisingly, they also discovered that organizations laboring to improve the three main therapeutic areas served by Lilly - neuroscience, endocrinology and oncology, which accounted for 87 percent of the drugmaker's US sales - received 94 percent of the grants made by the drugmaker to all health advocacy groups that year. And the study, which was published in the American Journal of Public Health, concludes that the "lack of transparency is disappointing because, either by design or through a convergence of interests, the HAOs in the current study pursued activities that promoted the sale of Lilly products."
We asked Sheila Rothman, the lead author and a professor at the Mailman School of Public Health at Columbia University, more about why this matters and what suggestions she can offer. Here's what she had to say: "These HAO’s operate with a legacy of trust, so disclosure becomes important. Remember, they are 501c3 organization (which means they have tax-exempt status) but they're actually very effective lobbying organizations at both state and federal levels in helping to set policy.
"There’s nothing wrong with taking money from drug companies, but I think they do have an obliagtion to disclose. Their lobbying agenda is so closely aligned to drug companies - open formularies, greater access to drugs - that it becomes complicated. They owe it to the public to tell them who their donors are and why they are getting the money.
"You know, it can seems as if these are ordinary citizens lobbying, which legislators may suspect, but not really know that the companies help support these organizations. And the drug companies love them because they are very effective – a person talking about a disease is more effective than a lobbyist talking.
"Remember, none of these companies are giving money to these organizations because they’re nice guys. They’re in business and they believe they can help them. If their advocacy succeeds, Lilly makes money. It’s not a straight line, but it’s so close I think there has to be disclosure. And if they don’t want to disclose maybe they should mandate to disclose." What do you think?
Should Health Advocacy Groups Be Required To Disclose Funding?
- Yes (95%, 130 Votes)
- No (5%, 8 Votes)
Total Voters: 137
13 Comments
Take the American Heart Association hiding their industrial funding sources from their website and public [high gloss] annual report. My guess is that about $m250 is from industry. We know that the executives share $m3 in wages and 'incentive bonuses' [average $60,000/year], i.e. largely a % of the money they get from industry.
The result: they support research that will NOT resolve the quest to find the causes of heart disease, publish "soft pap" useless recommendations and promote the fear of lab numbers for which their benefactors produce drugs and that don't deal with rue causes [cholesterol / non life-saving statins are a case in point].
Ditto with the device industry and has become the hallmark of cardiology. The AHA happily endorses junk cereals regardless the % of sugar, as long as they do not contain cholesterol, and this for a handsome yearly fee [that at least is public].
The cancer, diabetes and probably the vast majority of these charitable sounding fronts use well meaning volunteers but, in part by the weight of the funding, tow the corporate line.
Then there are 'not for profit' CME firms that hide their funding.
yes
Frankly, this is the one of the last bastions of "dirty marketing" that the pharma companies use. I have seen it first hand - and the more "emotional" the disease - the more egregious the crimes. Many of these advocacy groups are merely a place to launder marketing tactics that would normally raise a red flag with the FDA. The lack of transparency needs to be changed immediately.
are any of them following NAMI's lead with disclosing on their Websites?
Many of these so called advocacy organizations are nothing more than marketing tools for the pharmaceutical industry.
Besides the flow of money being funneled into these organizations like NAMI, DBSA, CABF, etc....You might want to look a little at the KOL's on their governing boards to really see how industry controlled they actually are...
They are anything but non or not for profit entities...just another in a very long line of dirty pharmaceutical industry shenanigans...
CHILD ADOLESCENT BIPOLAR FOUNDATION OPEN YOUR ACCOUNTING BOOKS and disclose to your PAID members (parents and caregivers)which scientific advisory members take pharma money (ProPublica Dollars for Docs) such as Grassley investigated Biederman, DelBello and Kiki Chang and more! This advocacy group is the main ones alongside NAMI that pushes pills for treatment paradigm and has heavy ties to pharma, and having corrupt conflicted advisors that shape their forums to parents is WORSE than a check from Lilly, Merck et al which they have disclosed in the past of taking!
YES YES this is the last dirty money dumping ground that is at the heart of patient care and support and needs exposure!
The authors of the American Journal of Public Health article failed to point out that all patient advocacy organizations that are members of the National Health Council, the leading national organization for patient advocacy organizations, must meet a Standards of Excellence® Certification Program (www.nationalhealthcouncil.org/forms/soe.pdf), which states the organization “must have a written board-approved policy that … MANDATES the disclosure of financial support received as a result of the corporate relationship.”
The authors also acknowledge in their article that their search of health advocacy organization (HAO) websites was inadequate to conclude whether HAOs disclose all financial support, and the data they presented contradicted their assertion that increased donations in certain therapeutic areas influenced sales.
Nancy Hughes Assistant Vice President, Communications and Marketing National Health Council
The people that benefit from open disclosure of pharma payments/perks to doctors are patients. These groups should disclose 100% of "grants" from pharma as well.
When dealing with an industry that makes up ~ 1/6 of our economy, more disclosure across all aspects of the health industry is better.
I want to know who is influencing my provider and how and I want to know who is putting money behind certain health advocacy groups.
Money has a big influence on many factors.
Included is the AHA that would then, according to your criteria, have to publish a similar list .. if they are 'members'.
I challenge you to find such list for the AHA. It was not available when Enron's Anderson accounting firm did their books, and from which such apparently ~500 page accounting statement was never findable among the thousands of documents. Things have not improved.
It is easy to find 'donate' on their and your websites but no accounting / "partner" links on the home pages.
Although I have not seen the full document, the Standards that Nancy Hughes quotes, are not the ones that were in effect in the period covered by our research. The ones then effect were called National Health Council, Guiding Principles for Voluntary Health Agencies in Corporate Relationships To see the original document, go to imapny.org. As to the power of our search, we used HAO web site because they are the public face of the organizations. Ms. Hughes offers no evidence that the omissions on the website were corrected elsewhere. Moreover, our article states that Lilly's policy was to make its grants in its areas of therapeutic interest. we nowhere said that Lilly's grants increased its sales. Finally, all the names of the organizations that received Lilly grants, the amount of the grants, and whether they acknowledged Lily are posted on our website, imapny.org.
Sheila Rothman Professor Public Health Mailman School of Public Health Columbia University
Dr. Rothman and the National Health Council (NHC) are in agreement that health advocacy organizations should be transparent about the receipt of corporate donations. This is why the NHC’s Standards of Excellence mandates public disclosure (http://www.nationalhealthcouncil.org/forms/soe.pdf). The current Standards were adopted by the NHC Board of Directors in June 2008. In order to become or to maintain membership in the NHC, health organizations must adhere to the Standards, and all current members are in compliance. What is at issue here is the document that Dr. Rothman used in writing her piece and that she posted on her website is an outdated document from 1998 that has been revised several times. Her assertion, based on that document, does not reflect the current policy of the National Health Council or our health advocacy organizations. Like many association policy documents, our guidelines evolve in order to keep pace with a changing environment. Nancy Hughes
To have meaningful progress in this sector, transparency will be helpful at many levels, certainty including disclosure of industry funding of advocacy groups and academic experts, but also on all sorts of other areas so the public can better evaluate the performance of products, policies and business practices.
Make that "certainly"