According to a story from The People’s Pharmacy, a Senate report from 2018 highlights how opioid manufacturers regularly donate large sums of money to professional organizations and patient advocacy groups. While patient advocacy organizations are generally perceived as representing the interests and perspectives of patients themselves, it is common practice for them to receive support from the pharmaceutical industry, which raises concerns about their independence. Are advocacy groups really playing a role in sticking up for patients, or are they just industry puppets?

In the realm of rare disease, the connection between pharma and patient advocacy is especially pronounced. After all, many rare disease communities don’t have approved therapies and are relying on the drug development process as it exists, which must obviously include buy-in and involvement from drug companies, in order to improve the lives of patients.

The Senate report found opioid manufacturers shelling out upwards of $10 million to advocacy groups that appeared to be grassroots organizations working on the behalf of patients. Many of these groups supported opioid use and even increasing use, a position which is obviously favorable to the manufacturers. A review from 2017 published in the New England Journal of Medicine found that of 104 advocacy groups, 83% had received industry funding. The review was ominously titled, “Conflicts of Interest for Patient Advocacy Organizations.”

A massive range of advocacy groups covering various conditions were affected, meaning that conflicts of interest were the rule, not the exception. Advocacy groups can easily become dependent on financial support from drug makers, and with that support comes industry influence.

In the world of rare disease, it’s really hard to look for solutions to this problem. Unfortunately, patient groups that are doing everything they can to get a treatment or a cure developed have little choice but to appeal to the pharma industry. When the stakes are high, advocacy groups are often put into the position of trying to influence drug companies to give their rare disease attention in the first place.