Sobi tops Roche in rare disease patients’ reputation rankings

In recent years, Roche has made a habit of oscillating between first and second place on rare disease patient groups’ annual ranking of drugmakers’ corporate reputations. The zigzag continues into PatientView’s latest iteration of the report (PDF), released Tuesday, showing that it’s another down year for the Swiss pharma after it nabbed the top spot in last year’s report. PatientView surveyed a total of 518 patient groups representing dozens of rare diseases, including hemophilia and other bleeding disorders, cystic fibrosis, spinal muscular atrophy, pulmonary fibrosis and many more. Their responses detail their views of 32 pharmas and the industry at large in 2024, with corporate reputation defined as a combination of 10 factors that include patient-centricity, high-quality products and integrity, among others. This time around, Sobi took first place in overall corporate reputation as determined by the patient groups. That held true both among the groups rating the pharmas they’re merely familiar with and among those rating the companies they’ve actually worked with. In both cases, Roche took second place, while BioMarin took third in the familiarity ranking and UCB rounded out the top three in terms of companies the groups have firsthand experience working with. Sobi is a new addition to the pharmas included in the annual report; the rare disease-focused Swedish pharma’s medicines include the Sanofi-partnered Altuviiio for hemophilia A and the Apellis-partnered Empaveli for paroxysmal nocturnal hemoglobinuria and a pair of rare kidney diseases. Roche did get a boost when the assessment was limited only to the 14 biggest pharmas in the set, which excluded Sobi from the lineup. In that case, Roche took first in the rankings by both familiarity and firsthand experience, followed by Sanofi and Boehringer Ingelheim in the former, and AstraZeneca and Boehringer in the latter. Roche swept all four versions of the rare disease groups’ rankings last year—in familiarity and firsthand experience, among Big Pharmas and the entire group—which marked its return to the top after Horizon Therapeutics had snagged the throne the year before. Among the companies making the biggest strides in the rankings year over year, per PatientView, were Boehringer, UCB, Merck & Co. and Chiesi. Beyond ranking specific companies, the rare disease organizations were also asked about their views of the overall corporate reputation of the pharma industry. All together, 55% of the groups labeled the industry’s reputation as “good” or “excellent,” a slight dip from the 56% that said so in last year’s survey. That tracks with PatientView’s other findings this year, including its survey of more than 2,500 patient groups across all indications, among whom pharma’s positive reputation share slipped from 57% to 56%. Still, the rare disease patient groups surveyed have largely tracked improvements in the industry’s activities. All but one of their assessments of 14 specific industry activities have improved since 2020, the report shows, with pricing transparency the one area where they’ve seen the industry worsening. The biggest improvements since 2020, meanwhile, showed up in funding transparency, integrity and offering products that benefit patients.