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

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Mon, 29 May 2006 13:00:37 -0700

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

 

 

 

 

 

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.

 

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

 

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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Join MindFreedom International or renew your membership today!

 

Do you want to...

 

* Win human rights campaigns in mental health?

 

* End abuse by the psychiatric drug industry?

 

* Support the self-determination of psychiatric survivors?

 

* Promote safe, humane and effective options in mental health?

 

You are not alone! MindFreedom is a nonprofit human rights group that

unites 100 sponsor and affiliate groups with individual members, and is

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(NGO) with Consultative Roster Status.

 

MindFreedom is one of the very few totally independent groups in the

mental health field with no funding from governments, drug companies,

religions, corporations, or the mental health system. While most of

MindFreedom's members are psychiatric survivors, *all* who support

human rights are invited to join and become active leaders.

 

JOIN, RENEW, DONATE, or give GIFT MEMBERSHIPS to MindFreedom

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