Roche, Takeda and Pfizer notch top scores among rare disease patient advocacy groups

Fifty percent of rare disease patient groups polled earlier this year described pharma’s corporate reputation as “excellent” or “good," up from 45% in 2019 and 33% in 2018. (Alpha Stock Images)

Rare disease patients are seeing pharma companies in a better light these days—thanks in part to the COVID-19 vaccine halo effect, according to PatientView's latest survey of 230 rare disease patient advocacy groups. However, while some companies are doing better than others, there’s still a need for more transparency, better pricing and more patient engagement overall. 

Fifty percent of the groups polled described pharma’s corporate reputation as “excellent” or “good.” That’s up from 45% in 2019 and just 33% in 2018. The survey ran from November 2020 through February 2021.

When asked specifically about pharma’s response to the COVID-19 pandemic, 62% percent thought the industry had been “effective” or “very effective” in supporting patients during the crisis.

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The annual survey also asked groups to rank 29 pharmaceutical companies on their corporate reputation and patient support during COVID-19. Roche’s Genentech bested all other drugmakers in both categories, while Takeda ranked second and Pfizer placed third.

Amgen posted the biggest reputation improvement over last year's ranking, jumping 10 places to No. 13. The company saw big leaps in "patient information" from 17th to ninth place and "funding of external stakeholders," moving up from 23rd to ninth place.  

Genentech ranked first not just with rare disease patients but with all patient groups. Alex Wyke, CEO of PatientView, attributed its success to the company’s emphasis on patient relationships and patient-centric activities before the pandemic.

“When COVID came along, it meant that they could quickly turn around new strategies to help,” she said. For example, in Italy, company officials helped pick up groceries and prescription drugs for cancer patients during lockdown, a cancer patient group reported in another survey. 

The rare disease patient groups surveyed also tended to rate companies more highly if they adapted treatments to be administered at home during lockdown, when possible, according to Wyke. 

“Some companies did try to go the extra yard and others didn’t, so that affected their reputation,” she said. 

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When it comes to the industry's overall reputation boost, much of the credit is likely thanks to the industry’s quick turnaround of successful COVID-19 vaccines to fight the pandemic. 

As proof, pharma earned its highest ratings in categories like “creating products of benefit to patients” and “innovation," Wyke said. 

“But then, when you look at [categories having to do with] individual patients and their own circumstances, the feelings are more negative,” Wyke said.

When asked to rate pharma on “providing high-quality patient information,” 53% judged the industry “fair” or “poor” or said they “do not know.” 

Rare disease patients had lots of questions during the outbreak about how being infected with the virus or getting vaccinated might impact their treatment or condition, and patient groups felt answers from drugmakers were lacking.

The industry also scored lower in categories related to pricing or patient involvement in product development.

“Quite a few companies are moving into rare disease now, and I think that this is welcomed by these groups. But they’re really keen on being involved in R&D upfront and being engaged in the process, so that the results are more meaningful to them,” Wyke said.