d Letters From Grassley: National Alliance for Mental Illness State Chapter Letters – Round 2 - Policy and Medicine
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April 29, 2010

Letters From Grassley: National Alliance for Mental Illness State Chapter Letters – Round 2

As we wrote last year, The National Alliance for Mental Illness (NAMI) is one of the nation’s best organizations for helping families dealing with mental illness. Founded by relatives (parents and spouses) of those with mental illness, over the years they have been perhaps one of the most effective groups in helping those relatives and patients of mental illness deal with the disease and its sometimes life threatening or at least earth shattering effects. 

NAMI first came under investigation last April when Senator Grassley (R-IA) began sending letters to influential disease and patient advocacy organizations. As reported by Gardner Harris in the New York Times, Mr. Grassley’s investigation found that “a majority of the donations made to the National Alliance on Mental Illness, have come from pharmaceutical manufactures in recent years.”

The NYT reported that documents they obtained from Mr. Grassley’s showed “pharmaceutical manufactures from 2006 to 2008 had contributed nearly $23 million to the alliance, about three-quarters of its donations.” Such funding should be of no concern because the pharmaceutical industry only breaks down to about 50% of NAMIs $10 million to $13 million budget.

Although at the time, Mr. Grassley did not offer a solution for where this half of funding would come from if industry support was eliminated, NAMI’s executive director Mr. Fitzpatrick noted in his interview that NAMI has already begun “posting on its Web site the names of companies that donate $5,000 or more.”

As a follow up to his letters sent to all state chapters of NAMI last year, asking if they received any funds from industry, Senator Grassley sent another letter this week to Executive Director of NAMI, Michael Fitzpatrick. His letter, which focused on his request for NAMI state chapters covered the period of January 2005 to October 2009, included a table of the top ten states who submitted industry payment information:

-    California NAMI: $632,000     ($126,400 per year on average)

-    Delaware NAMI: $269,000     ($53,800 per year on average)

-    Florida NAMI: $414,000 ($82,800 per year on average)

-    Indiana NAMI: $356,000     ($71,200 per year on average)

-    Massachusetts NAMI: $308,000   ($61,600 per year on average)

-    Minnesota NAMI: $291,000   ($58,200 per year on average)

-    New York NAMI: $448,000     ($89,600 per year on average)

-    North Carolina NAMI: $250,000    ($50,000 per year on average)

-    Ohio NAMI: $623,000 ($124,600 per year on average)

-    Pennsylvania NAMI: $250,000 ($50,000 per year on average)

Of this payment data, Mr. Grassley noted that NAMI state chapter contributions were concentrated in the following pharmaceutical companies:

-    AstraZeneca Pharmaceuticals: $1,600,000    ($320,000 per year on average)

-    Bristol-Myers Squibb: $1,300,000     ($260,000 per year on average)

-    Eli Lilly and Company: $2,200,000 ($440,000 per year on average)

-    GlaxoSmithKline: $305,000   ($61,000 per year on average)

-    Janssen: $470,000 ($94,000 per year on average)

Despite Mr. Grassley applauding NAMI National for publishing its pharmaceutical company funding on its online database, he was still concerned with what NAMI National is doing to make NAMI state chapters more transparent. His concern was based on NAMI chapters accepting “substantial sums over the period” of inquiry.

With less than $6 million over five years total for all companies listed, on average, this breaks down to less than $1.2 million per year, between January 2005 and October 2009. This number is a pittance when you consider all the money used to bail out banks and other lending institutions. Regardless, Mr. Grassley asked that by May 10, 2010, Mr. Fitzpatrick respond to the following questions:

1)    What steps is NAMI National taking to help NAMI state chapters make sources of funding transparent?

 

2)    What does NAMI National do to ensure that money received by NAMI state chapters is being used properly and in accordance with all applicable law?

 

3)    Will NAMI National require NAMI state chapter leaders to complete and file conflict of interest forms?

 

In addition to these questions, Mr. Grassley also noted how he received responses from an “overwhelming majority of NAMI state chapters” to his initial letters. Despite only listing the top ten, he noted that the following states had failed to respond to his inquiry:

-    Alabama NAMI;

-    Arizona NAMI;

-    Connecticut NAMI; and

-    Hawaii NAMI

Based on this failure, Mr. Grassley asked if NAMI National believed it was acceptable for NAMI State Chapters to not respond.

Accordingly, with an “overwhelming majority of NAMI state chapters” responding, this continued inquiry into NAMI seems unnecessary. Many members join NAMI chapters 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. Part of raising awareness and finding a cure means fundraising for ways to continue research and to carry out studies.

Just because these treatments are found in corporate laboratories does not make the way these illnesses have affected the lives of patient groups any less real.

In fact, direct patient and family interaction with industry and the financing of public service campaigns suggest that industry is making patients their number one priority. There is no inherent conflict in such groups seeking out funding for cures and research for industry while lobbying for changes in legislation. It is merely a commonality of interests.

On one side, patient groups need new treatments and research to help fight mental illness and treat sick patients. Another side to this goal is to create legislation that creates funding opportunities and governmental regulations that allow for such groups to provide services to patients and share their research as vastly as possible.

Industry funding has helped the group fund weekly meetings in 300 locations to allow people suffering from mental illnesses to come together and discuss their problems, something NAMI could not do alone

The participation and support of industry is essential and, while it is certainly true that industry should not fund everything, Mr. Grassley and others have yet to offer alternative ways for these groups to continue to exist. Consequently, NAMI and industry need to be able to continue working together to offer more treatment options and services available for patients.

Ultimately, industry funding for NAMI is an important source of funding.  The money from industry allows NAMI to fight for better access to mental health treatments, something the organization would do “even if they had no relationship with pharmaceutical companies.” The fact that they have more financial support to create fundraising campaigns and raise awareness just makes their voice louder. Moreover, the impact industry provides shows that NAMI and industry are “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.”

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It should be noted that Thomas Sullivan discloses his interest and is not ashamed of what he writes. Something that cannot be said of "MsPiggy"

Financial Disclosure

Your disclosure notice shows massive conflict of interst regarding this topic: This should make a wonderful article though, "Pharma Funded organization supports Pharma funding of NAMI - (What a huge surprise)"

Thomas Sullivan is a Principal in Rockpointe Corporation and their subsidiary The Potomac Center for Medical Education; Since Januar 1, 2005 these entities have received educational grants from the following companies: Amgen, Amylin-Lilly, Astellas, Astra Zeneca, Boehringer-Ingelheim, Bristol Myers Squibb, Celgene, Daiichi Sankyo, Daiichi Sankyo – Eli Lilly, GE Healthcare, Genetech, Gilead, Eisai, Eli Lilly, Lantheus, Medicure, MedImmune, Medtronic, Merck, Merck-Schering Plough, Novartis, Otsuka, QLT Inc, Pfizer, Pharmion, Procter and Gamble Pharmaceuticals, Sanofi Aventis, Schering Plough, Solvay, St. Jude Medical, Teva Neuroscience and UCB Pharma.

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