Skepticism on the wane? Reputation study says U.S. patient groups give props to pharma

Could U.S. patient groups be warming up to pharma? Skepticism seems to be on the wane—at least by some measures, according to PatientView’s annual corporate reputation study.

Patient groups in the U.S. rated pharma companies’ patient-centricity, integrity and patient group partnerships much higher in this year's study, which compared 2017 to 2016. Ratings increased 10% or more in each category, while patient-centricity jumped the most last year—to 43%, up from 24% in 2016. 

Still, those boosts didn’t help U.S. pharma companies crack the top three among 169 U.S. patient groups polled. European and Japanese drugmakers nabbed those spots. Copenhagen-based Lundbeck was a three-peat at the top of the poll, winning the No. 1 spot for the third year in a row, followed by Brussels-based UCB and Tokyo-based Eisai. The highest-performing U.S. pharma was AbbVie in fourth place.

Part of the reason those three were top finishers with U.S. groups is that they're focused tightly on relatively small therapeutic fields. That allows those companies to invest heavily in patient relations in a single area, said Alex Wyke, CEO of PatientView. Plus, European and Japanese companies have been focused on patient-centricity for a while, although the U.S. is making strides.

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“One of the biggest factors, definitely in Europe and we’re beginning to see in America, is the need by patient groups and patients to feel they’re being engaged in the whole R&D process," Wyke said. "The move by the FDA to put patients at the heart is really one of the most fundamental changes that we’ve seen. I think it’s a real turning point in patient centricity.”

Peter Anastasiou, executive vice president and head of Lundbeck North America, said the most important thing is showing up. "We have about 900 U.S. employees, and we participate and lead more than 600 patient advocacy events each year," Anastasiou said via email. "This is people showing up on their own time—weekends and early mornings—to participate in awareness events, walks and fundraisers. Rain or shine."

And it's not just events, he noted. Employees are involved in advocacy, too. "Dozens of our employees sit on the local boards of advocacy organizations—again, committing their own time because they care about our patient communities and those causes, not because it’s part of their job," he said.

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Industrywide, U.S. patient groups didn't change their opinions much overall. Those ratings were fairly static, with only 32% of the U.S. groups agreeing that the industry as a whole had an "excellent" or "good" reputation, compared to 43% of global groups.

Pricing remained a sore spot for patients, both in the U.S. and globally, Wyke said. AbbVie won kudos for bucking the pharma trend with high launch prices; one patient group congratulated the company for bringing a new drug, the hepatitis C therapy Maryvet, to market at a reasonable price. That sort of praise—specifically about pricing—hasn't happened before, Wyke said.

More pricing trust and understanding could be on the way, however, she noted, because drugmakers are starting to lift the veil around their pricing decisions and policies. And they're discussing costs in an understandable way, key to gaining trust from patients and patient groups.

"Discussions are beginning to happen with patient groups, trying to educate them about how pharmaceutical companies go about things," she said, "with the thought that they can then disseminate to patients."