Wednesday, October 13, 2010

Under fire, NAMI tells where its money comes from

But why didn't it used to do this?

An article September 6 in the journal Chronicle of Philanthropy tells with ringing truth how much corporate and foundation funding the National Alliance on Mental Illness (NAMI) and several other major not for profit companies receive. Senator Charles Grassley, a senior member of the Senate Finance Committee, got on the tail of NAMI last year after it became known that it had substantial ties to the pharmaceutical industry. The story, by Suzanne Perry, is titled How Much Must Charities Disclose About Donors? and it's a staple of the magazine to inquire into the connections between nonprofits and corporations.

In this issue NAMI is praised by the senator for its “detailed, up-to-date information about its donors.” The article says “each quarter NAMI posts the names of all corporations and foundations that gave the charity more than $5,000, the amount they contributed, and how the money was spent. Visitors can see, for example, that in the second quarter of 2010, Pfizer paid $35,000 for a corporate membership; Ortho-McNeil-Janssen Pharmaceuticals $60,000 to NAMI Beginnings, the group’s quarterly magazine; and Eli Lilly $250,000 to the Campaign for a Better Tomorrow, a program to help the charity carry out its educational, advocacy, and training programs.”

Transparency is something new

This might be something for all of us to laud. But NAMI's transparency is brand new. A few years ago it received about half its annual funding from drug companies. And it never told us anything about that, the loyal congregations who flocked to its annual conventions year after year. There were speakers who talked about medicines and treatments for all the major mental illnesses, in lectures and seminars, and “ask the doctor” sessions. The company salesmen and women handed out brochures and pamphlets in the exhibit areas. They certainly did promote the products, even as we were thrilled to take home pens and doodads as souvenirs for listening to their spiels at the demonstration desks.

It's a question whether we were sold on any one company's products when we had easy access to talk to the salespeople behind the desks. After all, this was the mingling that made these conferences work. We knew the big names in the field like Pfizer and Novartis, Lilly and Astrazeneca, would be there, and they were every time.

But the way they influenced us with tidbits about their products—the newer ones like Abilify and Geodon at the time or the old standbys like Risperdal and Clozaril, was different from the way the speakers talked about treatments. We were more engaged by the science they spoke of, like how the drugs would overcome the lethargy and inertia that marked our children's lives, or how they would rid our children of the hallucinations and delusions forever invading their consciousness.

We put great faith in the pronouncements of the doctors who let us ask questions standing in a long line to reach the mike and they answered in the most specific terms they knew how. We asked why some symptoms persisted as the course of the illness waxed and waned; what were the best combinations to overcome the delusions and when should dosages be raised or lowered. In this sense, they certainly did influence our knowledge of the specific illness and what medicines were recommended over others.

I don't remember ever feeling brainwashed at these educational sessions when you could talk to more than one doctor personally for a few minutes in the course of the day, and expect they were sincere.

The political and ethical sides

Mike Fitzpatrick, the executive director of NAMI in Arlington, Va., said the organization had never let its fund raising sources dictate any of its policies. But Senator Grassley's committee found that NAMI was taking in a lot of drug company money while it was promoting industry-backed legislation.

From my recollection, NAMI leaders and board members never said anything prejudicial about individual drug companies. But maybe that's the point; NAMI was kept in business by these donors and never let on to what extent it was under their wing. By saying nothing, we never learned what subtle influence a company might have had on NAMI's political activities.

NAMI maintains a full time lobbyist who visits congressional offices on the Hill and the federal agencies like the Center for Mental Health Services (CMHS) that govern mental health policies.

A former board member, Richard Lamb, a professor of psychiatry at the University of California, resigned from the board last year because of its “financial dependency” on drug company revenues. “It's not ethical, as I see it,” Dr. Lamb says in the article. “It seems to me if you are going to take money from drug companies, you should take no position whatsoever on psychopharmaceutical matters.”

According to the Chronicle article, Dr. Lamb says that Fitzpatrick wrote an article in the journal Psychiatric Services in 2008 urging policy makers not to impose rules that would prevent government health plans like Medicaid from paying for so-called second generation anti-psychotic drugs for schizophrenia, even though the drugs were more expensive than earlier versions. “That point of view,” he says,”is worth many billions of dollars to the same companies that provide money to the mental health alliance.” (Roy Neville)

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