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Replies from NAMI and Mental Health America regarding drug industry support

Email from Bob Carolla, Senior Writer; NAMI Media Relations, Communications & Public Affairs

8/11/2016

Excerpt:

In terms of finances, the 70% figure you cited probably was based on an erroneous New York Times
story in 2009 [http://www.nytimes.com/2009/10/22/health/22nami.html]. We corrected it in a letter to the
editor at the time Sources of Donations to a Mental Illness Group (It was about 50%). In 2015, the
proportion was 19%. See also the "Our Finances" section of the NAMI websites. It includes a quarterly
registry of major corporate and foundation contributions.

****

Email from Paul Gionfriddo, President and CEO, Mental Health America

8/11/2016

Excerpts:

Let me give you something for the record, if this helps: MHA accepts donations from individuals and
corporations, including pharmaceutical corporations, as well as government and foundation grants and
other dollars available to nonprofits. The centerpieces of our current work our B4Stage4 campaign, our
screening program, our screening-to-supports initiatives, our peer credentialing program, our social self-
directed care program, our workplace mental health program, our RPC (state and regional policy
program), May is Mental Health Month (and related public education work), our annual conference
themes, and our federal policy work and efforts were all developed internally by staff and volunteers,
not directed by individual or corporate donors. We take pride in the fact that we are the most successful
mental health advocacy organization ever created by someone with lived experience, and that over the
years we and our affiliates have always been at the forefront of the most progressive initiatives of every
era.

Paul

_______________________________________

Paul Gionfriddo

President and CEO

Mental Health America

***

follow-up email query by Art Levine to Paul Gionfiddo and MHA leadership, 8/11/2016

[re: drug industry support, affecting MHA policies, including on over-drugging of kids?]
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Excerpt:

I would appreciate if the specific estimates or data on pharmaceutical contributions as percent of total
revenues could be provided me. I've learned from some calling around that your organization set a goal in
about 2009 or so, to have drug industry contributions kept to about 30 percent of national organization
revenue sources. What is it today?

On drug industry executives advisory roles, in recent past or now: In the past or recently, have there been
drug industry executives in advisory roles of any kind? Apparently, there is a new advisory group in last
year or so, and is that membership list public -- and what is the advisory group's role?

Overdrugging kids with antipsychotics--What is MHA national stance or has any state organizations
taken position? What's your position now?

I'd also appreciate hearing from you or other MHA official on the record, if possible, or on background,
why your organization hasn't apparently taken a public stance on overmedication of kids with
antipsychotics-- and such overuse means that psychosocial and personalized psychotherapies are
underused. As a reminder, here's some previous stances of your organization on appropriate early health
care for children -- I used conduct disorder, because that's exhibited by some kids who get these meds --
enclosed in a P.S. It it seems to some observers that extreme overmedication described by HHS Inspector
General, New York Times (infants are getting it, and use by one-year-olds and under is rising) and San
Jose Mercury News [read 1st installment, and new 6th and 7th installment] would undercut those goals
and the use of psychotherapies and proven psychosocial programs. So why not speak out on that issue so
far? What comments can you or others at MHA give me now in writing or in an interview on that topic.

For further information, here's a new story about a recent Health Affairs article that found that
antipsychotic prescribing for foster care kids, and non foster care, has leveled off, but other elements of
good practice, using personalized psychotherapies and doing medical monitoring of kids taking
antipsychotics, is being slighted by most states: http://news.rutgers.edu/research-news/quality-challenges-
persist-antipsychotic-medication-foster-care-and-other-medicaid-covered-
children/20160606#.V60TdU0rJD9 Is that something your organization should address, along with
continuing dangerous prescribing off-label, and if not, why not?

I look forward to hearing back from you or other leaders with their views -- and some data based
on currently public information on your website, such as what percent of national revenues come from the
drug industry now -- and what portion, approximately, at the state and local levels?

****

Reply from Paul Gionfriddo, President and CEO, Mental Health America

8/15/2016

Excerpts:

Your questions go beyond what is publicly available on our web site, but I think the following should help
you:
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MHA used to have a target of no more than 33% of its revenues coming from corporate pharmaceutical
donations. The problem was that as other sources went down, the actual percentage crept up even though
the pharma dollar amounts were also going down (something you noticed in the table you provided
below). So in 2014 we changed the target to a range of 25-50% of actual revenues as we worked to
develop new sources of government, foundation, and other corporate revenue all of which were close to
zero two years ago. In 2016, it looks like our actual will be roughly one-third, but it could also end up
lower than that, because our other revenue sources are growing now.

I am sorry that you were confused by the levels of pharmaceutical donations reported by MHA in 2008
versus 2015. The simple answer to that is that we didnt get any $500K or $1M pharmaceutical donations
in 2015. We also dont have any other corporate structures to which dollars could have been directed to
support MHA. What you see is pretty much what we got.

State and local affiliates of MHA are independent 5013 organizations. So you really would have to ask
each of them directly your question about their pharma revenues. I imagine the percentages will vary. I
only know about one directly, because my wife runs it MHA of Palm Beach County. They get zero
revenue from pharmas.

We have a number of informal advisory groups that weve formed (or are in the process of forming) to
advise on prevention strategies, other policy and program issues, and building our corporate brand and
identity. To my knowledge, only one person on any of these is employed by a pharmaceutical company,
and that is on the still-forming non-public group to offer confidential advice to me on how to build our
corporate brand.

We have a number of informal advisory groups that weve formed (or are in the process of forming) to
advise on prevention strategies, other policy and program issues, and building our corporate brand and
identity. To my knowledge, only one person on any of these is employed by a pharmaceutical company,
and that is on the still-forming non-public group to offer confidential advice to me on how to build our
corporate brand.

MHA is not for over-drugging kids with anti-psychotics or anything


else: http://www.mentalhealthamerica.net/positions/childrens-services. We do support the appropriate use
of medications for all age groups, and that position is expressed in a number of our position statements. I
also wrote about the inappropriate use of drugs in my book, Losing Tim: How Our Health and Education
Systems Failed My Son with Schizophrenia. Because the inappropriate use of medications with children
is a much bigger issue than just the over-medication of (some) kids with anti-psychotics, I would
encourage you to read it, and would be happy to answer any additional questions that you may have about
medicating kids afterwards. One of the reasons that we are passionate about the adoption of ubiquitous
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mental health screening for children as has been recommended by the US Preventive Services Task
Force for everyone over the age of eleven is to prevent incorrect diagnoses and inappropriate treatments
of all kinds.

Paul

_______________________________________

Paul Gionfriddo

President and CEO

Mental Health America

#B4Stage4