[PHNUTR-L] Nonprofit Health Advocacy Groups Portray Themselves as
Allies. Can They Serve Corporate Benefactors at the Same Time?
Kathrynne Holden, MS, RD
fivestar at nutritionucanlivewith.com
Tue Feb 7 05:30:33 PST 2006
Colleagues, the following is FYI and does not necessarily reflect my own
opinion. I have no further knowledge of the topic. If you do not wish to
receive these posts, set your email filter to filter out any messages
coming from @nutritionucanlivewith.com and the program will remove
anything coming from me.
Nonprofit Health Advocacy Groups Like to Portray Themselves as Patients'
Allies. Can They Serve Corporate Benefactors at the Same Time?
By Tinker Ready
Special to The Washington Post
Tuesday, February 7, 2006; HE01
Diabetes patients anxious to weigh the pros and cons of an experimental
diabetes drug called muraglitazar might expect some help from the
American Diabetes Association (ADA). But they won't find much on the ADA
For example, there is no information about research linking the drug to
possible increased risk of fatal heart problems. Also, the Web site has
yet to report that the Food and Drug Administration (FDA) approved the
drug only on the condition that its maker, Bristol-Meyers Squibb --
which last year donated more than $1 million to the ADA -- produce
additional safety data first. The diabetes group acknowledges financial
support from the drug maker in its annual report and on a Web page
called "Corporate Health Ambassador Case Study," but not the precise
amount of the donation.
Similarly, if patients have questions on drugs for bone loss, they might
think the National Osteoporosis Foundation (NOF) would help sort things
out. But the NOF Web site doesn't get into the scientific debate over
the long-term effects of Fosamax, the most popular osteoporosis drug on
the market. Merck, the maker of Fosamax, is a longtime NOF donor, and
it's named in NOF's annual report. But the organization does not
disclose how much it gets from Merck and other supporters.
In general, groups like the NOF and the ADA don't raise alarms about
drug safety -- even for drugs made by non-donors. The groups portray
themselves as advocates rather than watchdogs, committed to improving
awareness of the diseases and raising funds to develop cures and
preventive measures. But some consumer groups say these nonprofit
organizations sometimes put their corporate sponsors' interests ahead of
Amy Tenderich, a blogger who created the Diabetesmine.com Web site, said
she shares with many diabetes patients a hunger for information on new
treatments. "You want to know what's coming. Is it safe? Is it going to
save my life?" she said.
Even though she thinks the ADA is an important resource for diabetics,
she is cautious about getting drug news from the organization.
"Those of us in the diabetes community also disseminating information
take everything the ADA says with a grain of salt," she said. "It is
clear that the organization . . . is very careful not to step on the
toes of its supporters and the advertisers in its magazines."
The ADA says it didn't go into detail on muraglitazar's safety because
it doesn't have access to the clinical data; the NOF says it restricted
its Fosamax information to what was available from the FDA. Both groups
say their policies are not influenced by their corporate partners. At
the same time, they court sponsors with a promise of increased access.
For example, a statement on the ADA Web site reads, "At ADA, we strive
for new and ongoing relationships that not only provide goodwill but
also make good business sense for the companies that work with us."
Reads another statement, "Companies find American Diabetes Association
(ADA) sponsorships and cause-marketing programs to be effective in
amplifying their message and increasing their reach to consumers."
Marc Boutin, vice president of the National Health Council, an advocacy
group that includes nonprofits and drug companies, says the
patient-oriented groups haven't sold out; they just see their priorities
differently from watchdog groups. They know their constituents -- people
with chronic diseases -- care not just about drug safety but also about
access to potentially effective drugs, even those that carry serious risks.
"We know all prescription drugs are not going to work as they are
intended and that there is going to be a risk for some people," Boutin
said. "The challenge is: How do we balance that risk with the need for
drugs right now? . . . I don't think the industry [donations have] any
impact on this."
Each year, the makers of drugs and medical devices donate millions of
dollars to disease-related nonprofits. The groups are not required to
disclose details of their corporate funding, and most release only
limited information, typically in annual reports and at sponsored
events. In such cases, they generally report contributions within dollar
ranges -- acknowledging donors, for example, that give between $50,000
At the ADA -- which reported raising and spending more than $200 million
last year -- the most generous donors give $1 million or more. That
group includes Eli Lilly, AstraZeneca and Novo Nordisk -- all companies
working on new drugs for diabetes. The NOF reported revenues of about
$6.3 million in its 2004 annual report.
Some groups' Web sites feature the names of their corporate donors, but
often these names appear only in an annual report. Exact donation
amounts are rarely listed, though some groups are willing to provide
numbers on request.
People who look to these groups for independent information may never
learn about their financial ties to drug makers. That needs to change,
say some consumer advocates, now that nonprofits are playing a larger
role in drug safety debates. When disease advocacy groups weigh in on a
drug up for review by the FDA's Drug Safety and Risk Management Advisory
Committee, they say, the public may be unaware of potential conflicts of
During his recent two-year term on the committee, Wake Forest University
health sciences researcher Curt Furberg frequently heard testimony from
disease advocacy groups. Unlike other speakers, he said, spokesmen for
the groups do not identify their potential conflicts of interest at
these meetings. But Furberg said they often sound like they represent
Typically, he said, the groups will present a patient to testify that a
drug with emerging safety problems changed his life for the better.
"I don't doubt that," Furberg said. "But it is interesting that there
was no widow at the hearing who says, 'My husband took these drugs and
he had a heart attack and died and it changed my life.' It's not
balanced. . . . My sense it that one point of view is missing -- the bad
Boutin and others argue that the disease advocacy groups are not in
industry's pocket: Drug company money accounts for a relatively small
part of most groups' budgets, he said. Plus, he added, most groups have
guidelines to deal with any conflicts of interest these relationships
Thomas Moore, a drug safety analyst at George Washington University
Medical Center, isn't convinced that the guidelines are working.
"The whole system is unbalanced because there aren't any skeptical
advocates out there," he said.
Who's Your Daddy?
Industry funding of medical research has been on the rise since Congress
passed a 1980 law encouraging additional collaboration between industry
and academic scientists. Concerns about this trend have prompted a move
toward greater transparency. Rather than restrict such alliances --
which supporters say encourage innovation -- journals, universities and
government panels now routinely require scientists to disclose potential
conflicts of interest, including funding from drug companies.
So when a researcher writes a journal article, he often notes his
industry supporters. But when Robert Lindsay, director of the clinical
research center at Helen Hayes Hospital in New York, spoke as NOF
president from 1992 to 1999, no such disclosure was required. (The NOF
lists corporate donors -- including osteoporosis drug makers Aventis and
Eli Lilly--in its annual report, but not specific amounts.)
As recently as 10 years ago, osteoporosis was an under-recognized and
under-treated disease, says Cindy Pearson, director of the National
Women's Health Network. Now the opposite is true, says Pearson, whose
Washington-based advocacy group doesn't accept industry funding: More
younger women are being tested and treated -- sometimes unnecessarily,
she says -- for a pre-condition called osteopenia.
"I'm not ready to say that NOF is a front group," she said, "but this is
a real issue. The continued over-promotion of the disease seems more
about marketing than women's health needs."
The NOF supports an aggressive approach to bone density screening and
treatment. Some medical experts advocate more conservative, targeted
testing. But NOF treatment guidelines have not been revised.
Women who are diagnosed with low bone density often are prescribed the
bone loss drug Fosamax, made by long-time NOF supporter Merck. Fosamax
sales rose from $1.3 billion in 2000 to $3.2 billion in 2004.
Lindsay, now a member of the group's board of trustees, said bone
density testing needs to be more targeted and NOF guidelines updated --
much more is known about bone strength today than when the guidelines
were written in 1999. But he disagreed that industry funding impacts NOF
"I was president of the organization for seven years and I never thought
industry tried to pressure us to do anything that was inappropriate," he
said. Judith Cranford, NOF's executive director, agreed.
Still, when preliminary evidence emerged last March that long-term use
of some osteoporosis drugs -- including Fosamax -- may weaken bones,
this news was never posted on the NOF Web site. In deciding what to
post, "what we do is follow the FDA recommendations and information,"
said Cranford. The FDA has so far said nothing about the safety question.
When her doctor prescribed Fosamax for her osteopenia several years ago,
Sammy Stevens, a 63-year-old high school Spanish teacher, went to the
NOF Web site for information.
After taking hormone replacement therapy for many years, she wanted to
make sure Fosamax was not another drug with potential safety problems.
"When I looked for information [on the site] about Fosamax, I always
reached a dead end," said Stevens, who lives in Broken Arrow, Okla.
Stevens, who communicates with osteoporosis patients all over the world
via Internet bulletin boards, never considered the group's funding
sources. "I sort of thought they were funded by the government," she said.
The ADA also offered little detail when worrisome information recently
surfaced about a pending diabetes drug.
In October, researchers from the Cleveland Clinic reported in the
Journal of the American Medical Association that muraglitazar -- the
first in a promising new class of drugs that could reduce both blood fat
and blood sugar -- was linked to a rise in heart attacks and strokes.
The ADA took note in a short piece it posted temporarily on its Web
site, but the story did not come up in a recent search on the site for
Like the NOF, the American Diabetes Association generally does not get
involved in drug safety debates.
"No one in our arena does, because we don't have the data to know
whether something is safe or not," said Richard Kahn, the ADA's
scientific officer. In the case of muraglitazar, a drug not yet on the
market, he said, the organization had to defer to the FDA because the
agency has access to all of the company's clinical data.
"An article appears that says the drug has an unfavorable profile, but
[the drug] is not approved." He said. "For consumers of the world, it's
moot. And we can't weigh in on that debate because we don't have the
data," Kahn said.
The ADA does present information on experimental drugs, but usually in
the context of an abstract or press release from the group's annual
When an approved diabetes drug comes under scrutiny, the ADA will
sometimes offer guidance to physicians, Kahn said. "But our
organizations are not in a position to make factual statements about
whether a universe of people should not take a drug or should take a drug."
Some diabetes activists feel that's an appropriate response. Jeff
Hitchcock, creator of the "Children with Diabetes" Web site, says the
FDA -- not the ADA -- should monitor drug safety. As a disease advocate,
he sees industry as a welcome partner.
"It is industry that has advanced diabetes care over the years, not
advocacy or research organizations," he said. At the same time, he
agreed more candor about industry ties might answer critics' worry about
conflicts of interest.
"Perhaps fuller disclosure might mitigate that," Hitchcock said.
For their part, health advocacy groups see this as unnecessary. The way
they see it, the interests of patients sometimes overlap with those of
drug makers. "They are living with these diseases and they are living
with these prescription drugs," said Boutin of the National Health
Council. "They're in a pretty good place to decide where this balance
ought to be. I don't think it has anything to do with the companies." ·
Kathrynne Holden, MS, RD < fivestar at nutritionucanlivewith.com >
"Ask the Parkinson Dietitian" http://www.parkinson.org/
"Eat well, stay well with Parkinson's disease"
"Parkinson's disease: Guidelines for Medical Nutrition Therapy"
More information about the PHNUTR-L