Patient advocacy groups say pharma needs to be a better partner

Patient advocacy groups said they could be more effective if they pooled efforts
Patient advocacy groups said they could be more effective if they pooled efforts

Patient advocacy groups are not convinced that drugmakers are invested in helping patients, according to a new report published by inVentiv Health Public Relations Group.

Advocacy groups told inVentiv that they are suspicious about the pharma industry's commitment to helping patients because of experiences like seeing support disappear when patent protections start to wane and generics are about to hit the marketplace. Elizabeth Pollard, executive director of the World Parkinson Coalition, told inVentiv that if drugmakers were serious about supporting patients they “would make an effort to stay in the space somehow [and] not have their involvement only tied to profits.”

Advocates from the 43 interviewed patient groups—which included organizations such as the Lung Cancer Alliance and CureDuchenne—said pharmaceutical companies too often mistake social-media interactions with patients for relationships and that a true partnership includes discussing an array of subjects, including the progress, successes and failures in the drug-development process. This sort of transparency would go a long way in terms of goodwill, advocates pointed out.

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Patient groups want to be active participants in drug development because their members are immersed in their own needs as patients and this information could be used to guide clinical trial endpoints.

The push to incorporate patient input into drug development is not new. The most recent Prescription Drug User Fee Act requires the FDA to discuss patient-focused drug development. This requirement includes holding public meetings to discuss topics such as drug benefits that patients consider a priority and whether current treatments for a given disease are sufficient.

Advocates told inVentiv that they themselves could also become better partners by collaborating with other patient groups instead of trying to beat one another out for funding from industry. They said pharma could nudge patient groups in this direction by rewarding collaborating organizations with preferential funding.