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:
_Philadelphia Inquirer_ Sun, May. 28, 2006
Donations tie drug firms and nonprofits
Many patient groups reveal few, if any, details on relationships with
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
The National Gaucher Foundation, a supporter of people suffering from a
horrific rare disease, gets nearly all its revenue from one drugmaker,
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
Some health-care experts, although applauding the groups' work, are
calling for greater disclosure. And many patients expressed surprise at
"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
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
"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
"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
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
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.
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
"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
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
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
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
"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
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