How some drug companies manipulate patient advocates
Over the past few years, more information has come to light on the financial relationships between the pharmaceutical industry and doctors — the connection between industry payments and opioid prescriptions, for example.
However, a more subtle but just as concerning pattern is the infiltration of pharma money into patient advocacy groups. A Kaiser Health News analysis found that drug companies gave 12,000 donations to patient advocacy groups in 2015, worth $116 million in total — nearly double what drug companies spent on lobbying that year.
What does pharma “grooming” look like?
How does this influx of industry funding impact the positions that patient advocacy groups take on issues of drug efficacy and affordability? This was the topic of discussion at a recent event by PharmedOut, a Georgetown University Medical Center project that educates health care professionals and students about pharmaceutical and medical device marketing practices (see the video recording of the event below).
Erin Little, a patient advocate from Ontario, CA who raises money for research on the rare disease cystinosis, shared her family’s story of being wooed by a drug company that was promoting a newer (and much more expensive) version of the drug her daughter was taking. She referred to the actions of the company as “grooming,” because parents of children with rare diseases are in a vulnerable position, desperate to keep their children alive. Pharma representatives used compliments, charm, and even tears to build an emotional connection with Little and other families of children with cystinosis.
“You can imagine the hope that filled my heart when a pharmaceutical rep stood up to talk about a magical drug,” recounted Little. “He cried and told us he loved our kids like his own. I was sobbing uncontrollably over the fact that someone out there cared about our children.”
The impact of advocacy-pharma relationships
Little and her organization remains free of pharma funding, but she is the exception, not the rule. This funding has a profound impact on the drug approval process, as testimony from patient advocates has become more common. The strong response from the Alzheimer’s Association after CMS’s decision not to cover Aduhelm is one recent example
Cindy Pearson, former executive director of the National Women’s Health Network, shared her experience watching patient advocate groups testify at FDA Advisory Committee meetings over the years. Even though many advocacy groups had been funded –and some likely coached– by drug or device companies, their testimony still had a strong impact of the advisory committee members. “What I remember very vividly is committee members saying, ‘I just don’t want to be mean…I want to be responsive,'” said Pearson.
What can we do about this? While disclosure of industry funding is imperative, it’s not enough, the experts said. Agencies that review evidence should be sure to invite more independent advocates, instead of just those funded by pharma. Patient advocacy groups should “just say no” to pharma funding, even so-called “unrestricted” grants.
“Once you’re getting money, you pretty well know that if you start criticizing the company, you’re not getting another grant,” said Sharon Batt, professor of bioethics at Dalhouse University in Nova Scotia, CA.
The limits of disclosure
A recent article in the journal Big Data and Society uncovers another important limitation of financial conflict disclosure. Researchers Shai Mulinari of Lund University in Sweden and Piotr Ozieranski at the University of Bath in the UK point out that the accessibility of information on industry payments to doctors through the Open Payments database may actually make it easier for industry to track how their funding to physicians is working and find new physicians to target for “key opinion leaders.”
For example, one marketing article suggested that marketers could use the Open Payments database to see whether target physicians are financially involved with other pharma companies, or to identify the most “sought-after” physicians with “star power.”
“While the Sunshine Act has clearly helped expose important commercial influences on both prescribing and the scale of industry involvement with physicians, it has also, paradoxically, fuelled further commercial surveillance and marketing,” Mulinari and Ozieranski write.