October 27

NAMI Constituency Betrayed

Senator Charles Grassley has hit the bull’s eye when he asked the NAMI (National Alliance on Mental Illness) to submit financial documents showing where it gets its funding.  The documents submitted to Sen. Grassley confirm that NAMI is a front organization for pharmaceutical companies who underwrite ¾ of NAMI donations—in 2006 to 2008 that was a hefty $23 million.

In return for industry’s largesse, NAMI devotes its efforts to help increase industry profits: NAMI promotes the most toxic drugs in pharmacopoeia to its ostensible constituents—the families of persons diagnosed with mental illness—disregarding the irrefutable, documented evidence of these very drugs’ propensity to induce debilitating, irreversible severe adverse effects.
See: Anatomy of an Epidemic by Robert Whitaker:

Rather than putting its efforts on improving the quality of life with humane care for the mentally ill, NAMI has been instrumental in promoting the expanded use of toxic drugs even for use in children.

And NAMI has been instrumental in lobbying state and federal legislators for unrestricted use of these highly toxic drugs and increased taxpayer funding through Medicaid.

Documents have surfaced during the course of litigation indicating the extent to which NAMI cavorted with one or another drug maker, promoting their antipsychotic drugs.

For example, the case against Pfizer brought by states attorney general:

Pharmalot reported (Oct 23) that Jim Daily, NAMI Kentucky official, accepted money to be on the AstraZeneca consultant program to promote Seroquel:
NAMI refers to AstraZeneca as “a strong effective partner. 
"The purpose of the Seroquel Consultant Program is to discuss ways that AstraZeneca can better partner with our consumer groups at the national, regional and local levels…”  See, AstraZeneca letter to Daily

Furthermore, Mike Fitzpatrick, NAMI’s Executive Director, made presentations at an AstraZeneca meeting (2003) when he headed NAMI’s policy research institute. His presentation, Pharmalot reports, included details on the crisis in state budgets at the time, Medicaid funding and tips on building community coalitions – at state and local levels – to further support for using antipsychotics.

The agenda at the meeting included a discussion of MAP initiatives. MAP is an acronym for Medication Algorithm Project, a program that began in Texas as a means of determining when to prescribe psychotropic drugs – such as Seroquel and other antipsychotics – for people in state-run programs. However, MAP has drawn controversy as an alleged stalking horse for drug makers that simply want to boost prescriptions.

Beyond these questionable activities for a 501-C3 non-profit actively working to divert much needed Medicaid funds on behalf of corporate interests, the real crime is NAMI’s betrayal of the people it claims to represent.

How many families were persuaded by corporate-generated propaganda disseminated by NAMI (in return for "donations") into urging their loved ones to ingest antipsychotic drugs—such as Risperdal, Zyprexa, Geodon, Seroquel, Abilify?

How many family members suffered catastrophic, drug-induced debilitating, irreversible harm as a result of false claims disseminated by NAMI about these drugs’ safey profile and benefits?

How many families buried loved ones who died as a result of a toxic drug reaction from the drugs promoted by NAMI?

Posted by Vera Sharav

THE NEW YORK TIMES
October 22, 2009
Drug Makers Are Advocacy Group’s Biggest Donors
By GARDINER HARRIS

WASHINGTON — 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.
“For at least the years of ’07, ’08 and ’09, the percentage of money from pharma has been higher than we have wanted it to be,” Mr. Fitzpatrick said.
He promised that the industry’s share of the organization’s fund-raising would drop “significantly” next year.

“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.”

Mr. Fitzpatrick said Mr. Grassley’s scrutiny, which he described as understandable given the attention paid to potential conflicts of interest in medicine, had led his organization to begin posting on its Web site the names of companies that donate $5,000 or more. And he predicted that other patient and disease advocacy groups would be prodded by Mr. Grassley’s investigation to do the same.

“Everyone I talk to wants to have more balanced fund-raising,” Mr. Fitzpatrick said.

In a statement, Mr. Grassley praised the alliance for its disclosures. “It’d be good for the system for other patient groups to do what NAMI has done,” he said.
Mr. Grassley’s scrutiny has been unnerving for patient and disease advocacy groups, which are often filled with sincere people who are either afflicted with serious illnesses themselves or have family members who have been affected. Many join the groups in the hope of making sense of their misfortune by helping to find a cure or raising awareness of a disease’s risks and frequency.

Drug makers are natural allies in these pursuits since cures may come out of corporate laboratories and the industry’s money can help finance public service campaigns and fund-raising dinners. But industry critics have long derided some patient organizations as little more than front groups devoted to lobbying on issues that affect industry profits, and few have come under more scrutiny for industry ties than the mental health alliance.

For years, the alliance has fought states’ legislative efforts to limit doctors’ freedom to prescribe drugs, no matter how expensive, to treat mental illness in patients who rely on government health care programs like Medicaid. Some of these medicines routinely top the list of the most expensive drugs that states buy for their poorest patients.
Mr. Fitzpatrick defended these lobbying efforts, saying they were just one of many the organization routinely undertook.

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. The documents show, for example, that the alliance’s leaders, including Mr. Fitzpatrick, met with AstraZeneca sales executives on Dec. 16, 2003.

Slides from a presentation delivered by the salesmen show that the company urged the alliance to resist state efforts to limit access to mental health drugs.
“Solutions: Play Hard Ball,” one slide was titled. “Hold policy makers accountable for their decisions in media and in election,” it continued.
The alliance’s own slides concluded by saying, “We appreciate AstraZeneca’s strong support of NAMI.”

Mr. Fitzpatrick said that the alliance frequently had such meetings and that the organization would fight for better access to mental health drugs “even if we had no relationship with pharmaceutical companies.”

Tony Jewell, an AstraZeneca spokesman, said that the company was “committed to improving health through partnerships with nonprofit organizations” and that “includes striving to ensure people can access our medicines through formularies managed by state Medicaid agencies.”

Copyright 2009 The New York Times Company

 


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