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Health advocacy groups often fail to report Big Pharma grants, report finds

Yet another report is raising concern about the financial relationships between Big Pharma and many health advocacy organizations (HAOs) — relationships that are all too often not fully disclosed.

As regular readers of Second Opinion will know, Sen. Charles E. Grassley, R-Iowa, has been investigating payments to HAOs from drug and medical-device companies for several years, and last fall I reported here on The Chronicle of Philanthropy’s troubling look at the financial ties between medical nonprofits and industry.

It’s important to keep following the huge amount of money that streams from the pharmaceutical industry to HAOs for, as the new report points out,

[HAOs] are among the most influential and trusted stakeholders in U.S. health policy, pursuing an agenda that includes expanding government support for medical research and the availability of health care services. In addition, HAOs advocate for members’ unrestricted access to all drugs, devices, and diagnostic tools relevant to their health conditions, almost always favoring branded drugs over generics, new screening technologies over older ones, and open formularies rather than closed ones. These positions closely correspond to the marketing aims of pharmaceutical and device companies; each position would help to increase product sales.

What the study found
For this report, which appears in the American Journal of Public Health, a research team led by Sheila M. Rothman at Columbia University’s Center for the Study of Society and Medicine examined Eli Lilly’s grant data for the first two quarters of 2007. Eli Lilly was chosen for the analysis because it was the first company to make its grant registry public. Here’s what the researchers found:

  • Only 25 percent of the 161 groups that received grants (totally $3.2 million) from Lilly during those six months disclosed the funding on their websites. (Lilly gave grants to 188 HAOs during that period, but not all had websites.)
  • Only 10 percent acknowledged that Lilly had helped sponsor an organization-related event.
  • Only 1 percent acknowledged Lilly on their website’s corporate sponsorship page.
  • None of the groups disclosed the exact amount of the grant it got from Lilly. 
  • Only 18 percent of them acknowledged the grant in their 2007 annual reports.

Lilly’s grants primarily went to HAOs involved in three areas of medicine: neuroscience (mental disorders and disabilities), endocrinology (diabetes), and oncology (cancer). These three areas also accounted for 87 percent of the company’s $10 billion net drug sales in 2007.

Most (66 percent) of the grants went to organizations concerned with neuroscience, particularly with the mentally ill. Lilly’s two best-selling products in 2007, Zyprexa and Cymbalta, are used to treat mental and neurological disorders. (Both have been at the center of controversies concerning side effects.) Its third best-selling product that year was Humalog, which is used for the treatment of diabetes.

Among the 161 HAOs that received Lilly’s grants in 2007 are Minnesota chapters of the Mental Health Association, the National Alliance for the Mentally Ill and the American Diabetes Association.

A convergence of interests?
Lilly’s “Principles for Interacting with Health Care Professional Associations” state that grants are not “obligated or directed to use these funds in a manner that benefits the company or its products,’’ but as Rothman and her colleagues point out, “the distribution of grants makes clear that formal stipulations were not required to satisfy Lilly’s marketing interests.”

The report also points out that the industry-funded umbrella organization of HAOs, the National Health Council, is not encouraging its groups to be more transparent about pharmaceutical funding — unless asked:

“Companies are increasingly basing decisions regarding relationships with not-for-profit organizations on whether these relationships support business goals,” [the National Health Council] informed members. Rather than give guidance on procedures to avoid or manage conflicts of interest, the National Health Council told HAOs “to enhance their ability to accomplish their mission in areas where the interest of the not-for-profit and the for-profit organizations overlap.” The organization acknowledge the “possible negative impact [on] … public image and integrity, whether real or imagined,” so it concluded that HAOs should “disclose financial and other benefits it receives from a corporate relationship, when asked.”

Rothman and her co-authors conclude that HAOs “should become far more detailed in disclosing corporate grants, including the grant’s purpose and amount. HAOs should also disclose their industry relationships when testifying before legislative or regulatory committees, serving on advisory panels, and communicating with the media.”

They also argue that the Sunshine Act, passed by Congress last year as part of the U.S. health reform law, should require companies to report grants to HAOs. Right now the law, which becomes fully operational in 2013, only requires that companies make their gifts to physicians public.

Update: You can read the full report online through a ProPublica link here.

Comments (5)

  1. Submitted by Danny Haszard on 01/17/2011 - 01:00 pm.

    Eli Lilly Zyprexa reproached
    They called it the *Five at Five* (5 mg at 5 pm to keep nursing home patients subdued and sleepy) and *VIVA ZYPREXA* (Zyprexa for everybody) campaigns to off label market Eli Lilly Zyprexa as a fix for unapproved usage.
    Big Pharma companies that have relied on fraud to market industry’s worst pharmaceuticals–antipsychotic drugs–which have become industry’s most profitable cash cow.

    Daniel Haszard Zyprexa victim activist and patient who got diabetes from it.

  2. Submitted by Susan Lesch on 01/17/2011 - 08:35 pm.

    I wonder if we could get the link fixed ( gives it a 404 not found error).

    Thank you for your important article, Ms. Perry.

  3. Submitted by Paul Scott on 01/17/2011 - 09:30 pm.

    Thanks for telling this very important story Susan. I am wondering if Grassley is ever going to release the findings of his inquiry. Mostly though, like the previous commenter, I am troubled that the marketing of antipsychotics appears to have made up the lion’s share of the efforts on the part of the company in question in this study. Again, I ask, why is a drug for a rare condition, schizophrenia, the most profitable drug in the country. Does anyone even care? It is being used to vastly expand the treatment pool considered “bipolar,” with help from compliant health media, and as this piece shows, patient advocacy organizations that are surely being used. Something like a fifth of all SSRI users are now being given the drug as polypharmacy, and then the drugging of the elderly and children with a drug that appears to cause type II diabetes is surely the most horrifying part of this tale.

  4. Submitted by Nancy Hughes on 01/18/2011 - 09:10 am.

    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 (, 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.” If you go to the Standards, you will not find the quotes in the article attributed to the National Health Council. The authors never contacted the National Health Council to discuss our Standards.

    The authors even acknowledge in their article that their search of health advocacy organization 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

  5. Submitted by Sheila Rothman on 01/21/2011 - 01:45 pm.

    This is one of half dozens where Ms. Hughes has gone on a blog and misrepresented our finding. She makes it appear as if the current NHC policy which she cites was in effect in 2008 the period of our research. This policy was not. The policy that we cited in our article was in effect then. Ms. Hughes makes it appear that all her members have all disclosed their corporate support–but is that true? I am still waiting for her to name the names of the organizations that disclosed where we can find the disclosures (to the dollar amount.)

    If readers would like to read the NHC policy in effect in 2008, they should go to On the website is also a list of the all organizations that were part of our study, the sums they received and whether or not they disclosed.

    Sheila M. Rothman
    Professor of Public Health
    Mailman School of Public Health
    Columbia University

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