You no longer need to speculate about patient advocacy groups as a new study has shown that these groups
often have deep ties to industry and receive large amounts of money
from industry.
Researchers say one solution to the
problem is simply requiring disclosure from these groups, bringing
them more in line with other medical stakeholders. The Sunshine law
is part of the Affordable Care Act, passed by Congress in 2010. It
mandates that every pharmaceutical and medical device company in the
country annually disclose payments made to doctors and teaching
hospitals for a range of activities — including promotional
speaking, research grants, meals, and trips of at least $10 value.
In addition, manufacturers and group purchasing organizations are
required to report physician ownership or investment interests.
“We created a Sunshine Law for
researchers that required full disclosure from the pharmaceutical and
device industries about how they pay the doctors,” said Emanuel.
“This needs to happen for patient advocacy groups.”
Read many articles about drug prices or
the need for new medicines in the US, and you will find patient
advocacy groups also in the debates, supposedly speaking up for the
people with chronic diseases.
These organizations and advocacy groups
represent millions of people with cancer, MS, and diabetes. These
groups are often the first places people turn to for help when they
receive a diagnosis.
The new research sheds light on a
disturbing problem not disclosed by these organizations. Their deep
ties with industry may be compromising their ability to serve the
very patients they’re supposed to help.
A new study from the New England
Journal of Medicine found that 83 percent of the nation’s top 104
patient advocacy groups — like the American Diabetes Association
and American Cancer Society — receive funding from drug and medical
device companies. Nearly a quarter got more than $1 million each year
from the industry.
The researchers also found that, in
addition to the financial support, at least 39 percent of patient
groups had current or former industry executives on their boards,
meaning industry players are helping guide and govern these
organizations.
Research for decades has shown that
cozy relationships between doctors and industry — for instance,
industry-sponsored medical education and free drug samples from
pharmaceutical companies — can bias doctors’ judgment in all
sorts of negative ways.
And now the
authors of the NEJM paper are concerned about the influence of
industry on patient advocacy groups, which have a history of pushing
for the FDA to approve drugs like “pink Viagra” (of questionable
benefit to women) or helping label sugary breakfast cereals as
healthy food choices for Americans. Reports have also surfaced about
other patient groups that failed to advocate about rising drug prices
— and happened to get industry funding — suggesting they may be
working more for companies than for the patients they represent.
Medicine has
become more transparent over the past decade, with drug and device
makers now publishing information about which doctors and teaching
hospitals they give money or gifts to, and medical journals and
research institutions pushing for clear disclosures on conflicts of
interest. The idea is that transparency is a disinfectant that
reduces the risk of bias in research and medical practice.
Yet patient
advocacy groups have mostly escaped scrutiny, said Ezekiel Emanuel,
University of Pennsylvania researcher and co-author on the study.
“Patient groups
have been seen to be knights in shining armor and above reproach,”
Emanuel said. “They haven’t established [the conflict of
interest] policies that everyone else — from major hospitals to
researchers and journals — has had to.”
The new research
suggests this has to change. For the NEJM paper, Emanuel and his
co-authors looked at the Form 990 tax records, annual reports, and
websites of the largest US-based patient advocacy groups, with annual
revenues of at least $7.5 million. They found patient groups were
failing miserably at managing their conflicts of interest. The vast
majority took money from industry, and yet 88 percent of the
organizations the authors looked at had not published policies for
conflicts of interest.
More than 40
percent of the groups also didn’t publicly disclose the amounts of
donations they received, and only 10 percent shared how their
donations were used. So, in many cases, transparency about funding
was a big problem.
The American
Diabetes Association got the most funding from the industry: more
than $28 million in 2014 alone. Other groups got smaller amounts —
that represented a huge portion of their annual revenue. The
National Hemophilia Foundation listed contributions from drug and
device makers between $8.5 million $14 million, for example. (The
ambiguity there is the result of the fact that they only list ranges
in their giving.) Their annual revenue is around $16.8 million, so
the industry funding made up half to a majority of their earnings.
“A lot of
people believe and really trust in patient advocacy groups,” said
Susannah Rose, who authored another recent study in JAMA Internal
Medicine on US patient advocacy groups, which came to similar
conclusions. “These groups are often very powerful — not only
providing care and direct access to patients and physicians — but
they are also big players in national and state and local governments
in terms of policy development and driving research agendas.”
And they need to
maintain their independence from the industry to keep their
credibility, she added.
