Since the fall of 2015, and against a backdrop of harsh media attention to pharmaceutical pricing, patient advocacy groups that form partnerships with pharma companies have received negative coverage in the New York Times, USA Today and other publications. There is a familiar yet misinformed line of analysis in these articles: patient organizations support lobbying initiatives by industry partners in return for much-needed cash.

Many readers lack an understanding of the quintessential services advocacy groups provide to patients. As a result, some probably believe the accounts they read in the papers. But is money really at the heart of advocacy-industry partnerships? In early 2015, inVentiv Health PR Group conducted in-depth interviews with 43 patient advocacy groups across a range of diseases to learn what they seek from their pharmaceutical partners. This year, we did follow- up interviews with many of the same organizations and some new ones—this time focusing on rare diseases. We also interviewed physicians and drug industry executives and asked a select group of payers involved in prescription and formulary decisions what they thought of advocacy-industry relationships.

The insights we collected in more than 18 months of research tell a very different story from what you may have read in newspaper accounts. The wish list from the groups we interviewed had nothing to do with building war chests to cover administrative costs or fluffy salaries…

Want to know what the No.1 priority for nearly all organizations was?  Click here to download this article in full from inVentiv Health Public Relations Group.