Survey finds close ties between drug companies and patient groups Posted by Earl Lui at 10/30/06 12:44 PM

The New Scientist's recent survey describes how some patient groups get substantial funding from drug companies. The article begins:

They are supposed to be grassroots organisations representing the interests of people with serious diseases. But Drummond Rennie, professor of medicine at the University of California, San Francisco, and deputy editor of the Journal of the American Medical Association, believes that some patient groups are perilously close to becoming extensions of pharmaceutical companies' marketing departments. "There's a crisis here," he contends.

The survey found seven groups received over 20% of their funding from pharmaceutical or medical device companies that sell treatments for the same disease. The Restless Legs Syndrome (RLS) Foundation, which was mentioned in comments to a prior post on this blog, was one of those seven. The New Scientist writes:

The Restless Legs Syndrome (RLS) Foundation, for instance, received more than $450,000 of its $1.4 million revenue in 2005 from GlaxoSmithKline (GSK) and nearly $178,000 from Boehringer Ingelheim. GSK's drug Requip was approved for the syndrome in 2005, while Boehringer Ingelheim has a drug pending FDA approval.

. . .

The extent of industry funding of the RLS Foundation is "pretty incredible", says one such critic, Steve Woloshin of Dartmouth Medical School in Hanover, New Hampshire. However, both the RLS Foundation and GSK reject accusations of disease-mongering.

. . .

The timing of donations also suggests a link to marketing interests, though donations to individual groups can vary from year to year for various reasons. Pfizer, for example, was a major donor to the RLS Foundation in 2003 and 2004. In July 2004 the firm announced that it had ceased developing its candidate RLS drug, and the following year donations to the patient group ceased.

Only two groups in the survey refused to take donations from drug or medical device companies--National Women's Health Network and Breast Cancer Action. The article quotes a researcher who has looked at the differences between independent and drug company funded patient groups. She found that:

Organisations that accept pharmaceutical funding "tend to advocate for faster review and availability of drugs, greater insurance coverage, and they tend to see 'direct-to-consumer' advertising as a benefit to patients", she claims. Groups that maintain financial independence, on the other hand, "emphasise safety over speed and are critical of direct-to-consumer advertising", she says

In an editorial entitled "Drug Companies in Bed with Patient Groups", the New Scientist points out the problems with patient groups receiving large amounts of drug company money:

[T]heir [patient groups] close relationship with industry can be worrying. Firstly, patients need information that is clear of bias, and this can be jeopardised when companies have a vested interest in getting groups to mention their products. Such tactics are a useful adjunct to more overt marketing strategies such as direct-to-consumer advertising, banned in Europe but common in the US. Secondly, patient advocates must feel able to criticise companies when appropriate - particularly over problems with drug safety.

The editorial argues that patient groups should insist that drug company funding should be unconditional, and used for things like supporting individual patients rather than limited only to providing information about treatment (which benefits the company). Finally, the editorial calls on patient groups to be transparent about their funding sources. Those two conditions seem to be pretty basic for any patient group that puts the interests of patients ahead of the interests of its drug company funders.

comments (4)

1 Posted by Ramon Castellblanch at 10/31/06 10:43 AM

It's good to see that the evidence-based health care advocates like Drummond Rennie are getting out there. Given the Rand finding that only 55% of care for common medical conditions is recommended care, we desperately need more scientific, up-to-date information on what works. Key to getting that information are patient groups that look out for patients, not drug-makers.

2 Posted by Ellen Liversidge at 11/01/06 12:37 PM

NAMI, which used to be called the National Alliance for the Mentally Ill, takes megabucks from the drug companies to fund its activities nation wide. If I'm not mistaken, they have paid staff in every state. Their solution for serious mental illness is medication, even though the atypical antipsychotics permanently harm (ex. diabetes) and kill those that are put on them.

I have emailed them that their website for Zyprexa is not correct. It does not even mention the warning that is on the label...for diabetes, hyperglycemia, and death. I worked to get this label so that others would not be killed as my son was when there was no label.

I had no idea of their involvement, but they fall all over themselves in a mutual admiration society with the drug companies. When asked about their support, they become very defensive and talk about the fact that they are supported in multiple ways.

The group is very discouraging to me. Once again, a disillusioning experience - to see yet again what an octopus the drug companies are.

3 Posted by bette angstadt at 11/01/06 05:09 PM

I just made a contribution to NAMI and was very upset to read that they work hand in hand with drug companies to promote the use of medication without even providing health warnings. I have also read that they spend more funds on minor psychological problems and less on the more serious forms of mental illness.

4 Posted by JazzyB at 08/11/07 08:19 AM

The National Medical Association (NMA) has strong ties to the
pharmaceutical industry with approximately 85% of all funding coming
from this industry. The NMA has approximately 1,100-1,700 paid
physician members with a large portion of them being resident
physicians and medical students although in its promotional materials
it cites over 25,000 members. The membership of the NMA has never
exceeded 3,000 physicians in any given year further a large portion
of
their members are retired physicians. Many critics believe that the
NMA is simply a front for the pharmaceutical industry and given its
stance on several issues that the pharmaceutical industry lobbyists
promote, this is a valid criticism. There is a direct link with the
NMA's position statements and policy and the major funders of the
organization (drug companies). Further, the NMA hosts a "health
policy
colloquim" each year that is soley and fully funded by Pfizer Inc.
The
organization uses this time to invite politicians, healthcare leaders
and physicians to talk about the health policy in the United States,
again this is fully funded, supported and attended by Pfizer Inc.
which leads many to question the credibility of the organization.
The NMA hosts a national conference each year that is attended by a
few thousand (approximately 1,000 physicians and the remainder are
spouses and families). This conference is usually held in a major US
City with Honolulu, Hawaii being the most frequented venue. In 2007
the NMA went back to Hawaii with every major pharmaceutical company
in
the United States in tow-- supporting the event financially. Indeed,
physicians are unashamedly wined and dined by drug companies, attend
lectures on medications and treatment regimens that are funded by the
pharmaceutical industry and are able to receive many perks from the
industry. This conference, a tax deductible family vacation, is the
major fundraiser for the organization. Additionally, the NMA has a
"journal" which is fully supported by the pharmaceutical industry and
is another profit center with "medical articles" that appear which
are
heavily weighted pro-industry.

The NMA offers little to no outreach to patients or support for
physicians that take care of patients. Any outreach that it does
extend is fully funded by the pharmaceutical industry or the US
government with a hefty portion retained by the organization to stay
afloat. The organization often exploits its history of being the
oldest organization of Black physicians to blackmail pharmaceutical
companies and in some cases the government for funding. However, the
NMA is not the largest organization of minority physicians-- the
American Medical Association's Minority Affairs Consortium (MAC)
actually dwarfs the NMA membership and incidentially has little to no
funding from the pharmaceutical industry. The NMA further exploits
its
history and misrepresentation of actual membership in efforts to
promote the recycled leaders. The "elected" leadership often consists
of the same persons in various positions and the organization is
fraught with political corruption, questionable elections and poor
policies. Additionally, financial audits have been troubling for the
organization and it refuses to release fully audited statements from
the last 20 years with only selective years being released. The NMA
has been sued by several employees-- all settled out of court to the
benefit of the former employee and has years of questionable employee
policies. This while remaining a tax exempt organization and when
challenged playing the "race" card and comparing itself to the
American Medical Association.

This is the NMA--- dig deeper and it just gets worse. Unfortunately
as
a former employee-- I know this organization too well. The NMA is a
sham, a front for the pharmaceutical industry and a diservice to the
nation.