Philly Inquirer: Secret psychiatric drug $$$ & NAMI, CHADD

[mindfreedom-news at intenex.net]

A _Philadelphia Inquirer_ probe *below* uncovers hidden money ties 
between psychiatric drug manufacturers and nonprofits such as NAMI and 
CHADD that promote these drugs.

The article quotes MindFreedom director David Oaks: "... the entire 
paradigm is owned by the drug companies, and ... the hazards of the 
drugs, like brain damage, are not discussed." Please forward:

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_Philadelphia Inquirer_ Sun, May. 28, 2006

Donations tie drug firms and nonprofits

Many patient groups reveal few, if any, details on relationships with 
pharmaceutical donors.

By Thomas Ginsberg

_Inquirer_ Staff Writer

The American Diabetes Association, a leading patient health group, 
privately enlisted an Eli Lilly & Co. executive to chart its growth 
strategy and write its slogan.

The National Alliance on Mental Illness, an outspoken patient advocate, 
lobbies for treatment programs that also benefit its drug-company 
donors.

The National Gaucher Foundation, a supporter of people suffering from a 
horrific rare disease, gets nearly all its revenue from one drugmaker, 
Genzyme Corp.

Although patients seldom know it, many patient groups and drug 
companies maintain close, multimillion-dollar relationships while 
disclosing limited or no details about the ties.

At a time when people are making more of their own health-care 
decisions, such coziness raises questions about the impartiality of 
groups that patients trust for unbiased information. It also poses a 
challenge for groups trying to hold patients' trust and still raise 
money to serve them.

An Inquirer examination of six groups, each a leading advocate for 
patients in a disease area, found that the groups rarely disclose such 
ties when commenting or lobbying about donors' drugs. They also tend to 
be slower to publicize treatment problems than breakthroughs. And few 
openly questioned drug prices.

At the same time, the groups perform an important function by providing 
services unavailable elsewhere, such as patient education and help in 
obtaining medications or affording insurance.

They also try to police themselves. For example, each declares it does 
not endorse or reject products. All formally require that industry 
grants be "unrestricted," meaning that there are no strings attached. 
One of them, Children & Adults with Attention Deficit/Hyperactivity 
Disorder, or CHADD, formally caps pharmaceutical donations.

Combined, the six received at least $29 million from drug companies 
last year, according to tax returns and annual reports. The amount 
ranged from 2 percent to 7 percent of revenue at the Arthritis 
Foundation, to 89 percent to 91 percent at the much smaller National 
Gaucher Foundation.

Some health-care experts, although applauding the groups' work, are 
calling for greater disclosure. And many patients expressed surprise at 
the ties.

"I don't think that would make a difference as far as taking a drug," 
said Gloria Antonucci, 65, leader of a Montgomery County pain-support 
group that relies on Arthritis Foundation advice. "But I think it would 
make me, maybe, 250 percent more skeptical about what the group is 
saying."

Jerome Kassirer, a Tufts University and Yale University medical school 
professor and author of On the Take: How Medicine's Complicity With Big 
Business Can Endanger Your Health, said better disclosure would guard 
against abuse.

"These organizations are susceptible to industry influence because they 
have trouble raising money themselves," Kassirer said.

But not all nonprofits are alike, said Marc Boutin, executive vice 
president of the National Health Council, a standard-setting coalition 
funded by nonprofits and drug companies. He said leading nonprofits 
with "fire walls" against donor influence were worlds apart from 
questionable organizations.

"We are controlled by volunteers who are living with a condition and 
the drugs they take, and I guarantee these people would not be 
influenced by a donor," Boutin said.

Matter of credibility

For drug companies, patient groups carry credibility that the industry 
sometimes lacks to target patients and "opinion leaders" who drive 
prescriptions, and hence, sales. Nonprofits also help patients stay on 
the medicine and push insurers to pay for it.

"Does it help us? Sure," said Matthew Emmens, Wayne-based chief 
executive officer of Shire PLC, the No. 1 ADHD drugmaker and a major 
donor to CHADD.

"In the industry, we feel we're doing a pretty good thing while making 
money, which is even better," said Norm Smith, president of 
Langhorne-based Viewpoint Consulting Inc. and veteran marketer for 
Merck & Co. Inc., Johnson & Johnson and others.

The donations are sometimes portrayed by the companies and nonprofits 
as "giving back" to patients. But the funding usually comes from the 
companies' marketing or sales divisions, not charity offices, company 
and nonprofit officials said. Grants often rise with promotional 
spending as a drug hits the market and fall when sales ebb.

Donations from Merck and Pfizer Inc. to the Arthritis Foundation more 
than doubled, to at least $1.65 million combined, in 2000 as they 
launched Vioxx and Celebrex. The donations fell below $375,000 by 2004, 
when safety fears had flattened sales, foundation reports show.

Merck explicitly wove the foundation into sales strategies. A 2001 
internal memo, disclosed in product-liability trials, shows that Merck 
sought to use the foundation's pain-management program to "demonstrate 
additional benefits" of its products.

Foundation president John Klippel said he was unaware of Merck's plan. 
But he dismissed it as an example of mutual interests in treatment, not 
profits. "We envision that as an educational program," he said. "Their 
marketing folks envision it as marketing."

When interests diverge, however, groups must be ready to face donor 
pressure. Michael J. Fitzpatrick, president of the National Alliance on 
Mental Illness, or NAMI, said one donor recently demanded that, in 
return for funding a TV public-service announcement, the ad include the 
company's direct contact information. Fitzpatrick said NAMI refused.

The industry also benefits in Washington and state capitals, where 
nonprofits lobby for issues such as expanded Medicaid drug coverage or 
treatment programs. That can boost sales.

All six groups are active lobbyists. NAMI, for example, urges and helps 
states and localities to create special one-on-one "assertive" 
treatment programs, which include making patients take their medicine.

It acknowledged that drug-company donors may benefit but insisted 
that's not the goal. "Nobody from the pharmaceutical industry tells us 
what to do," NAMI president Fitzpatrick said.

Unusual corporate gift

In 2000-2001, the American Diabetes Association did not disclose an 
unusual gift from Lilly: a lent executive, Emerson "Randy" Hall Jr., 
who moved into its Alexandria, Va., headquarters and coached it on 
growth strategies, all paid by Lilly.

Vaneeda Bennett, the ADA vice president for development, denied that 
the gift compromised the group but conceded that it might look bad. "We 
always walk a fine line on showing favoritism to one company or 
another. I would imagine other corporate donors would look askance at 
it," Bennett said, adding that, if it were offered again, "we'd ask for 
money."

Hall, a Philadelphia native now retired and living in Princeton, said 
he never tried to influence the group and merely helped it market 
itself, including writing its slogan, "Cure. Care. Commitment." He 
estimated that his work, including diabetes patient research he 
subsequently shared with Lilly, would have cost "hundreds of thousands" 
from a contractor.

Asked why it did not cite Hall on its tax returns or annual report, ADA 
spokeswoman Diane Tuncer said: "There is not a requirement to do so."

Nonprofit experts laud such executive "loans," as long as groups 
disclose them and limit their authority.

Another group, NAMI, did not disclose that Lilly marketing manager 
Gerald Radke briefly ran its entire operation. Radke began in 1999 as a 
Lilly-paid "management consultant," then left Lilly and served as 
NAMI's paid "interim executive director" until mid-2001. The group 
acknowledged this only after being shown Radke's resume listing the 
job.

NAMI's president, Fitzpatrick, said he did not know why his 
predecessors did not disclose Radke's work. He said using Radke "was a 
reasonable move to try to increase capacity."

"But there is a perception issue," he said. "So that makes it, in 
hindsight, a difficult choice."

Radke, of Harrisburg, declined to comment. After NAMI, he ran the 
Pennsylvania Office of Mental Health and Substance Abuse, and now 
serves in the state Health Department.

Indianapolis-based Lilly, which donated at least $2.5 million to the 
ADA and $3 million to NAMI between 2003 and 2005, called its executive 
loans mutually beneficial. "The primary goal is to assist that 
organization in developing a needed capacity or function, but it also 
often serves to assist in the career development of the employee," a 
Lilly spokesman, Edward G. Sagebiel, said.

Avoiding favoritism

Drug marketers battle hardest over safety and effectiveness, and 
nonprofits say they strive to avoid favoring one product over another. 
The six appeared to be cautious on safety scares and rarely took the 
lead sounding drug-safety alerts, even as they highlighted news of drug 
breakthroughs and approvals they say members demand, their materials 
show.

"We don't position ourselves as a watchdog," said Bennett of the ADA.

The ADA, which received 5 percent to 10 percent of its revenue last 
year from drug companies, reported little initially in 2004 about 
suspected diabetes risks from antidepressants. Instead, Tuncer, its 
spokeswoman, said it convened an expert conference - funded by drug 
companies - and ended up echoing the concerns.

The Arthritis Foundation, which received 2 percent to 7 percent from 
drug companies, said little in 2000 about early studies raising 
questions about Vioxx. But when follow-up studies confirmed the 
concerns in 2001 and 2002, the group highlighted the problems and 
called for more safety research. A year later, Merck cut off all 
donations.

Patrick Davish, a Merck spokesman, denied any link between the donation 
cutoff and criticism, calling it just a "change in funding priorities."

Klippel, the group's president, said he doubted there was a link but 
said it would not matter anyway. "It's not to say they've not been 
unhappy with us from time to time," he said. "But it would not 
influence me."

The ADHD group, while calling itself a science-based information 
clearinghouse, has not published some critical information about ADHD 
drugs, including an FDA warning last September about suicide risk from 
Strattera, made by one of its biggest donors, Lilly.

Its chief executive, E. Clarke Ross, said the group's professional 
advisory board took time to review all information before posting it. 
Although the group is an outspoken proponent of ADHD drugs, he said, it 
has strict fire walls against corporate influence. Indeed, it was alone 
among the six in publishing an easy-to-find figure on pharmaceutical 
donations: 22 percent last year, or $1.01 million.

"We have a number of conflict-of-interest practices that meet industry 
standards," he said.

NAMI, like most groups, lists only FDA-confirmed side effects and 
typically refers people with any questions to the drugmaker.

One outspoken NAMI critic, David Oaks of the support group MindFreedom, 
described the group as an independent but willing pawn of industry.

"We're not saying there is some conspiracy in a skyscraper by a 
pharmaceutical executive rubbing his hands together," Oaks said. "It's 
that the entire paradigm is owned by the drug companies, and that the 
hazards of the drugs, like brain damage, are not discussed."

NAMI's Fitzpatrick defended its information, but acknowledged that 
groups were facing demands for fuller drug information. "I think we 
should be much more like Consumer Reports. We should have transparency 
on both side effects and benefits," he said.

Close ties on orphan drugs

Ties between drug marketers and patient groups appear closest on 
so-called orphan diseases, which involve relatively few patients, 
experts and drugmakers. Financial disclosures by two groups show they 
used most of the deductible donations to pay the medical bills and 
insurance premiums of patients using donors' products. That, in effect, 
spreads around costs while leaving pharmaceutical prices unchanged.

The National Organization for Rare Disorders, a Connecticut-based 
coalition that tries to spur development of orphan drugs, got $10.5 
million - 68 percent of its revenue - from drug companies last year. It 
helps pay patients' premiums and bills, administers companies' 
free-drug programs and helps recruit patients for their clinical 
trials.

Founder Abbey S. Meyers said that donors did not shape her group's 
positions and noted that the industry needed the groups as much as they 
needed it: "I criticize them [donors] all the time. It has never come 
back to hurt us."

The Gaucher group, according to tax returns, received $1.77 million of 
its $2 million in revenue last year from Boston-based Genzyme, and 
spent $1.69 million on medical bills and insurance premiums of patients 
taking Genzyme's enzyme therapy Cerezyme, which cost insurers as much 
as $350,000 a year.

In contrast, the foundation took nothing from Actelion Pharmaceuticals 
US Inc., of San Francisco, maker of a second-line treatment, Zavesca, 
to be used when Cerezyme doesn't work. Actelion said the foundation 
rejected its no-strings grants and gave little or only critical Zavesca 
information.

"I don't want to say anything nefarious is going on. But it doesn't 
pass scrutiny," said Actelion's president, Shal Jacobovitz. He 
portrayed the foundation "almost as a commercial arm" of Genzyme.

Ronda P. Buyers, executive director, denied that the group is biased 
toward Genzyme. "We're two different organizations. We do get its 
money, which allows us to do what we do," she said.

Another company, Shire Human Genetic Therapies, formerly Transkaryotic 
Therapies Inc., which is developing an alternative to Cerezyme, also 
called the foundation unusually close with Genzyme, even though it had 
accepted Shire's small donations.

Genzyme "is aggressive, and it's all part of their marketing plan to 
have a dominant position," said Matt Cabrey, a Shire spokesman in 
Wayne.

David Meeker, president of Genzyme's lysosomal business unit, said 
Genzyme had no control over the foundation. He acknowledged that the 
group was so important for Cerezyme marketing that if it didn't exist, 
Genzyme would have looked for another.

"This is how we built our business," said Meeker, whose company took in 
$932 million last year from Cerezyme, high for an orphan drug. "It's 
also building a community where patients can get the help they need. 
It's the ultimate win-win."

Buyers, who did not respond to repeated follow-up calls after an 
initial interview, said:

"We cannot make them bring the price down. They do make a lot. But 
without the drug, there would be all these people who would be in such 
horrible positions. More people would die."

Contact staff writer Thomas Ginsberg at 215-854-4177 or 
tginsberg at phillynews.com.

http://www.philly.com

- end -

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    * ACTIONS * ACTIONS * ACTIONS *

* Please forward.

* E-mail letter to editor of 200 words or less, including address with 
day & evening phone numbers, to Inquirer.Letters at phillynews.com

More info on submitting letters and essays:

http://www.philly.com/mld/inquirer/news/editorial/14362606.htm

* See other recent media articles that include MindFreedom's 
perspective:

http://www.utne.com/pub/2006_135/promo/12090-1.html
http://www.intenex.net/pipermail/mindfreedom-news/2006-May/000033.html
http://alternativesmagazine.com/37/oaks.html

~~~~~~~~~

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