Pharma Still Doesn't Get Patient Groups

A survey of 600 patient groups worldwide conducted in late 2012 revealed that perceptions of the pharmaceutical industry soured in the past year, mainly due to issues of access, pricing, patient safety and transparency. The Corporate Reputation of Pharma in 2012-the Patient Perspective compared the reputations of 29 leading pharma companies around six different indicators. Despite a year of high drug approvals, patient groups’ lagging perceptions of progress in meeting medical need suggest that big pharma is still struggling to understand what “patient-centeredness” truly means.

Comparing 2011 to 2012, the survey finds that pharma’s performance fell 29% in managing adverse news about a product, 23% in having ethical marketing practices, and 19% in having a good relationship with the media. Alexandra Wyke, founder and CEO of PatientView, addressed specific concerns voiced by patient groups, highlighting, “if a clinical trial recruits patients via a patient group, the companies never tell the patient group the results; if a product goes generic, then the relationship with a patient group ends.”

When pressed for other reasons on pharma’s waning reputation, patient groups reported failure of companies to help southern European obtain affordable access to medicines, a preoccupation with drugs that offer only short-term benefits, lack of effort to develop medicines for neglected diseases, and inappropriate marketing practices. In 2011, people in HIV/AIDS patient groups marked down pharma quite a bit due to concerns that companies were not trying to find better drugs for their disease. “In 2012,” Wyke cites, “we saw greater appreciation of Gilead and pharma overall from these groups now that the industry has shown a desire to move forward with investments in HIV/AIDS R&D.”Individual companies were looked at using indicators of patient-centeredness; patient information; patient safety; useful products; transparency; and integrity. Novartis lost its position as top dog in the first four areas except for patient-centeredness, whereas Gilead Sciences lost the top transparency spot to Lundbeck, while retaining its top slot for integrity in both years. Lundbeck and Gilead made the top spots overall, respectively, and Wyke points out that “they’re there because they target specific disease areas and have tight relationships with corresponding patient groups,” whereas, large companies like Novartis “have an array of products covering different areas, and thus have to perform across the board to get a higher score.” This may be one reason why the 3 biggest companies in the top 10 lost ground: Pfizer fell from 2nd place to 5^th in rankings, Glaxo-Smith Kline from 4^th to 10^th, and Novartis went from 1^st to 3^rd, trading places with Lundbeck.

Such a marked decline in perceptions from patient groups demonstrates that many companies still do not understand what patient-centeredness means, and with it the fact that patient groups are important in improving market access and policy measures. As Wyke summarizes, “The more sophisticated companies realize a relationship with a patient group is ongoing, you can’t just buy in and buy out as it suits you. And it’s not just financial either; it’s about how to empower these groups, how to provide solutions beyond a simple funding offer.”