Cross posted from Beyond VSH:
Friday's New York Times covers an issue that Vermont patients' rights advocates have been trying to address for years. NAMI, a national organization that attacks the patients' rights movement and the very concept that anyone would have the right to refuse treatment by labeling mental illnesses as “brain diseases”, received almost $23 million from the drug industry in the last three years, almost three quarters of its funding.
What is true nationally is also true in Vermont. While Vermont's legislature has banned drug companies' “gifts” to doctors, if you visit NAMI-VT's annual conference on November 6 and 7 you'll see an ample array of note pads, Post-Its, clipboards, pill containers, and other drug company swag on display.
The dependency of NAMI on the drug companies is so complete that at least one advocacy group has called NAMI a Pharma front organization which, far from advocating for patient rights, has actually opposed the issuance of black box warnings for drugs with known cardiac risk factors.
In 2006, despite overwhelming evidence of serious adverse cardiac events and sudden deaths caused by ADHD drugs, NAMI took the position that the “black box” warning on ADHD drugs was “premature.”
There is no question that many NAMI members are sincere, generally parents and other family members truly concerned for the impact of mental illnesses on their relatives. Nevertheless, until NAMI rejects its ties to Big Pharma it will never be a truly legitimate voice for the rights, needs, and concerns of people with mental illness.
Jack knows better than to make this claim about the VT chapter, which receives only around 2% of its annual funding from pharma contributions. This is a matter of public record & was widely discussed & disclosed about a year ago in Counterpoint. NAMI-VT practices full transparency & discloses its finances in copious detail upon request (and on the web, at GuideStar.org). It’s also untrue that anyone attending NAMI-VT’s annual conference this year will see any drug company ‘swag’ in evidence–this was banned a couple years ago, due to state funding restrictions. He should check his facts before publishing them online.
A little history is in order. Jack & other “advocates” opposed to pharma funding tried to make a big deal about this 2% & demanded NAMI-VT practice complete abstinence. Strangely, nearly all these advocates are missing in action when NAMI tries to raise more funds locally through a walkathon event & other grassroots fund-raising efforts. Clearly, it’s easier to throw stones at others than to be part of a sincere effort to reduce the organization’s dependence on corporate support, which is a part of most nonprofit’s funding portfolio these days. Either that, or get serious about suggesting what NAMI programs & services should be cut to make up for that foregone funding. But that would actually require a serious discussion about the merits & effectiveness of NAMI’s programs–which is not where these critics want to go.
I agree that at the national level, NAMI’s voice is compromised by the large chunk of $$ it accepts from big pharma. But the local chapter receives no funding from the national association, and has only a small voice in its national policy and funding choices. So blackening the local chapter with the same broad brush used to smear the national organization is just plain unfair. More importantly, it undermines the good that NAMI-VT does with its info & referral, support groups & educational programs, all offered statewide & free of charge to Vermonters struggling with the impact of serious mental illness.
In the interests of full disclosure, I used to work for NAMI-Vermont, but don’t anymore. My comments should not be interpreted as an official response from the organization’s board, staff or volunteers.