After being ousted from the top spot last year, Roche has clawed its way back to dominance among rare disease patient groups’ assessments of drugmaker reputations.
Roche’s rise and fall (and rise again) have been charted by PatientView’s annual survey of hundreds of rare disease patient groups. It earned the best rating among major pharmas’ corporate reputations in 2022’s results before Horizon Therapeutics took over the throne last year. This time around, according to survey results (PDF) released Tuesday, Roche is back on top, though Amgen—the parent company of Horizon, as of last fall—still fared well.
PatientView compiled the views of a total of 533 patient groups, representing nearly 3 million patients and dozens of specialties, with bleeding disorders, metabolic rare diseases and cystic fibrosis among the most commonly represented.
When asked for their assessments of the corporate reputations of 31 major drugmakers in the field of rare disease, patient groups familiar with the pharmas ranked Roche first, followed by BioMarin and Amgen. When the list was narrowed only to the 15 biggest companies on the list, Amgen moved to second place, while Sanofi jumped into third.
The groups were also asked to evaluate the reputations of 28 pharmas that they work with. In that case, Roche and Amgen once again took the top two spots, with the top three rounded out by BioMarin when all pharmas were included and by AstraZeneca when only the 13 biggest pharmas on that list were considered.
Pharmas are increasingly interested in working with rare disease patient groups, according to PatientView. Since 2016, the number of drugmakers that count at least 10 rare disease-focused groups as partners has risen about 25%, from 48% then to 73% now.
While the groups value that increased collaboration with pharmas, they did outline some room for improvement in the industry. According to PatientView, many of the survey respondents suggested that drugmakers “ought to try harder to gain a deeper understanding” of the groups and the patients they represent. They also requested greater transparency from the industry, especially in terms of pricing and funding for other stakeholders in the healthcare ecosystem.
In fact, when asked to rate the industry’s performance on 14 factors important to the patient groups—ranging from transparency to integrity to patient engagement—the only one that received fewer “good” or “excellent” ratings this year compared to last, from 29% of respondents, was transparency around funding. Pharma’s performance in fair pricing policies remained the lowest-rated on the list, with only 14% giving it a positive review—though that represented a three-point improvement over last year. Highest-rated, meanwhile, was innovation, where 63% of the groups agreed pharma is doing a “good” or “excellent” job.
Overall, among those rare disease patient groups surveyed, the pharma industry as a whole remained in solid standing: A total of 56% rated the industry’s reputation as “good” or “excellent,” marking only a slight slip from the 57% of groups that said so in last year’s survey.
In that respect, pharma was one-upped by biotech. Just over 60% of the groups labeled biotech’s corporate reputation as “good” or “excellent,” giving it the best rating among a total of nine healthcare sectors, which PatientView noted “reflects the progress that biotech has made in early-stage R&D in the field of rare diseases (with pharma focusing on later-stage development).”