How drug companies manipulate patient advocacy groups

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From Lown Institute“In recent years, more information has come to light about the financial relationship between the pharmaceutical industry and doctors – the link between industry payments and opioid prescriptions, for example.

However, a more subtle but equally concerning pattern is the infiltration of pharmaceutical money into patient advocacy groups. A Kaiser Health News An analysis found that drug companies made 12,000 donations to patient advocacy groups in 2015, worth a total of $116 million, nearly double what drug companies spent on lobbying this year- the.

What does pharmaceutical grooming look like?

. . . Erin Little, a patient advocate from Ontario, California who raises funds for research into the rare disease cystinosis, shared her family’s story of being wooed by a drug company that was doing the promoting a newer (and much more expensive) version of the drug her daughter was taking. She called the company’s actions “grooming” because parents of children with rare diseases are in a vulnerable position, desperate to keep their children alive. Pharmaceutical reps have used compliments, charm and even tears to establish 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 magic drug,” Little recounted. “He cried and told us he loved our children as his own. I was sobbing uncontrollably that someone there cared about our children.

The impact of advocacy-pharma relationships

Little and her organization remain drug-funded free, but she’s the exception, not the rule. This funding is having a profound impact on the drug approval process, as testimonials from patient advocates have become more common. The strong reaction of the Alzheimer’s Association after CMS’s decision not to cover Aduhelm is a recent example.

Cindy Pearson, former executive director of the National Women’s Health Network, shared her experience watching patient advocacy groups testify at FDA advisory committee meetings over the years. Even though many of the advocacy groups had been funded – and some probably coached – by pharmaceutical or device companies, their testimony still had a strong impact on the members of the advisory board. “What I remember vividly was the committee members saying, ‘I just don’t want to be mean…I want to be reactive,'” Pearson said.

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