healthy4u: NAMI

A recent <a href="http://www.nytimes.com/2009/10/22/health/22nami.html">article</a> by Gardner Harris in the New York Times focused on the financial links among health care corporations and not-for-profit disease (or patient) advocacy groups. <blockquote>A majority of the donations made to the National Alliance on Mental Illness, one of the nation’s most influential disease advocacy groups, have come from drug makers in recent years, according to Congressional investigators. The alliance, known as NAMI, has long been criticized for coordinating some of its lobbying efforts with drug makers and for pushing legislation that also benefits industry. Last spring, Senator Charles E. Grassley, Republican of Iowa, sent letters to the alliance and about a dozen other influential disease and patient advocacy organizations asking about their ties to drug and device makers. The request was part of his investigation into the drug industry’s influence on the practice of medicine. The mental health alliance, which is hugely influential in many state capitols, has refused for years to disclose specifics of its fund-raising, saying the details were private. But according to investigators in Mr. Grassley’s office and documents obtained by The New York Times, drug makers from 2006 to 2008 contributed nearly $23 million to the alliance, about three-quarters of its donations. Even the group’s executive director, Michael Fitzpatrick, said in an interview that the drug companies’ donations were excessive and that things would change. </blockquote> However, he tried to downplay the influence of the pharmaceutical industry on the Alliance. <blockquote>'I understand that NAMI gets painted as being in the pockets of pharmaceutical companies, and somehow that all we care about is pharmaceuticals,' Mr. Fitzpatrick said. 'It’s simply not true.' </blockquote> Note the careful wording of this denial, though. He did not deny that most of what NAMI cares about is pharmaceuticals. Moreover, the article suggested how cozy pharmaceutical companies and the Alliance's leadership have become. <blockquote>The close ties between the alliance and drug makers were on stark display last week, when the organization held its annual gala at the Andrew W. Mellon Auditorium on Constitution Avenue in Washington. Tickets were $300 each. Before a dinner of roasted red bell pepper soup, beef tenderloin and tilapia, Dr. Stephen H. Feinstein, president of the alliance’s board, thanked Bristol-Myers Squibb, the pharmaceutical company. 'For the past five years, Bristol-Myers has sponsored this dinner at the highest level,' Dr. Feinstein said. He then introduced Dr. Fred Grossman, chief of neuroscience research at Bristol-Myers, who told the audience that 'now, more than ever, our enduring relationship with NAMI must remain strong.' Documents obtained by The New York Times show that drug makers have over the years given the mental health alliance — along with millions of dollars in donations — direct advice about how to advocate forcefully for issues that affect industry profits. </blockquote> In a <a href="http://www.nytimes.com/2009/10/30/opinion/l30donors.html">letter today </a>to the NY Times, NAMI Executive Director Fitzpatrick tried again to correct "misimpressions." <blockquote>First, the National Alliance on Mental Illness, or NAMI, has always disclosed corporate and foundation sources of revenue. Until this year, specific amounts remained private for competitive fund-raising reasons. Second, your estimate that pharmaceutical companies account for three-quarters of “donations” has been misinterpreted as a share of NAMI’s total annual budget — which is actually about 50 percent. </blockquote> Perusal of the <a href="http://www.nami.org/Content/NavigationMenu/Inform_Yourself/About_NAMI/Annual_Reports/NAMIAnnualReport2008.pdf">2008 NAMI Annual Report</a> does include this impressive list of "Corporate Partners": <blockquote>Abbott Alexza Pharmaceuticals Amazon AstraZeneca Blue Cross Blue Shield Bristol-Myers Squibb College of Psychiatric and Neurologic Pharmacists Corcept Therapeutics Cyberonics Delivery Agent, Inc. Forest Laboratories GEO Care GoodSearch.com The Health Central Network Janssen Pharmaceutica Eli Lilly and Company Magellan Health Services McNeil Pediatrics Neuronetics Novartis Otsuka America Pharmaceuticals Pfizer PhRMA RF Binder Sanofi-Aventis Shire Solvay Validus Pharmaceuticals WellPoint Wyeth YTB Travel Network </blockquote> The NAMI web-site now includes <a href="http://www.nami.org/Template.cfm?Section=Major_Foundation_and_Corporate_Support">lists of specific corporate donations</a> that individually exceeded $5000 since the beginning of 2009. So far this year, the biggest pharmaceutical corporate donors appear to be AstraZeneca ($350,000), Bristol-Myers-Squibb ($506,205), and Eli Lilly ($675,500).  Looking at the latest Form 990 filed on behalf of NAMI with the US Internal Revenue Service (available from GuideStar <a href="http://www.guidestar.org/FinDocuments//2008/431/201/2008-431201653-0469e087-9.pdf">here</a>)  provides more interesting detail. (Keep in mind that the 2008 form covers July 1, 2007 to June 30, 2008.)   This form listed the organization's total revenue as $13,788,288, and expenses as $12,796,205.  These expenses included $1,785,060 (13.9%) for management and $1,520,637 (11.9% ) for fund-raising.  The form listed eight NAMI executives who made more than $100,00 a year, including Mr Fitzpatrick ($210,685 total compensation). So, in summary, it appears that corporate donations, mainly from a few large pharmaceutical companies, supply a substantial portion, (maybe half, if I read the letter by Mr Fitzpatrick correctly) of the annual budget of NAMI. About one-quarter of that budget is spent on administration and fund-raising, including six-figure salaries for at least eight executives.  So who do you expect would more easily get access to the $200K+/year NAMI Executive Director, an executive of a pharmaceutical firm that supplies more than $500,000 a year, or a NAMI member who pays $35 dues? Here we have another example of a respected patient advocacy organization which gets a substantial portion of its revenue from (presumably the marketing departments of) a few large pharmaceutical companies.  (See another example <a href="http://hcrenewal.blogspot.com/2009/02/who-supports-fibromyalgia-patient.html">here</a>.)  Its well-paid executive director can at best bring himself to deny that the only purpose of the organization is to support pharmaceutical marketing and lobbying.  It seems reasonable that for supplying half the budget, the pharmaceutical companies expect considerable help not only with marketing but also with advocacy of policies that favor their corporate goals.  As I have said before, I do not have a problem with pharmaceutical and other health care corporations marketing their products, and expressing their views on policy. I do have a problem with corporate marketing or policy advocacy is disguised as grass-roots, not-for-profit education and advocacy.  If ostensibly not-for-profit disease (or patient) advocacy organizations like NAMI want to continue to accept corporate money, they should make it clear that they speak for their corporate donors as well as, and probably with priority over their members and patients with the diseases of interest.  Well-intentioned people who pay their dues, and/or make small contributions to NAMI to help the mentally ill might want to consider whether they are likely to have any influence compared to the individual pharmaceutical executives who oversee $500,000+ a year corporate donations. ADDENDUM (2 November, 2009) - See also <a href="http://www.furiousseasons.com/archives/2009/10/nami_lies_in_nyt_letter_to_the_editor.html">comments</a> on the Furious Seasons blog.

An Alliance on Mental Illness or for Pharmaceutical Companies?

A recent article by Gardner Harris in the New York Times focused on the financial links among health care corporations and not-for-profit d...

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