The unique state of healthcare in the United States has seen the rise of patient advocacy groups. The well-known among these organizations have essential missions. They provide invaluable services, such as advocating for research, representing patients through education, and navigating the healthcare maze. As the report makes clear, “the nation’s leading patient advocacy groups do critical work for the people they represent. They are an expert source of information on specific conditions, and some organizations run helplines and offer nurse hotlines.”(1)
However, a recent report released June 28, 2021, from the group Patients for Affordable Drugs (P4AD) reveals that some fine print is needed to disclose alliances with some of the largest pharmaceutical companies. These partnerships create potential conflicts of interest because, as the report indicates, some of these groups are either unable or unwilling to divulge funding provide by the drug manufacturers. They may not take positions on consumer issues such as lowering prescription drug prices out of concern of angering their drug corporation donors. Others are, in fact, actually “tools created and operated to serve the interests of their corporate supporters.”(2)
Naming names
P4AD examined fifteen prominent and well-respected patient advocacy groups. They also eventually broke those and other organizations into three different types of groups. The groups in the chart below, adapted from the P4AD version, show some of their key findings:
All but one of the 15 major patient groups examined fail to fully disclose the total amount of funding they receive from the pharmaceutical industry. Some do not disclose any, while others disclose only partial information.(1)
Many receive “millions of dollars from drug corporations and pharmaceutical trade associations each year.”(2)
The full report details the extent and policies the pharmaceutical companies have one the advocacy groups. Some of these include groups that have “failed to support recent policy proposals that would allow Medicare to negotiate prices for drugs, including insulin.”(2)
The three categories
The categories they arrived at have crucial distinctions, as evidenced by their names. They are: “Leading National Patient Advocacy Organizations,” “Pharma-Funded, and Allied Groups and Astroturf Organizations,” and “Pharma-Funded “Charity” Foundations/Independent Assistance Groups.”(2 )In addition to the leading fifteen described in Table (1), the report details eight other organizations. These eight are divided evenly into the latter two categories. Those are in Tables 2 and 3, respectively.
Table 1: Leading National Patient Advocacy Organizations(1)
Table 2: Pharma-Funded, and Allied Groups and Astroturf Organizations(4)
Table 3: Pharma-Funded “Charity” Foundations/Independent Assistance Groups(5)
The takeaway
Users of the patient advocacy groups’ information or services, especially patients and caregivers, should always consider that the pharmaceutical industry’s financial sway might influence the very public policies for which these organizations advocate. This influence is especially true in the area of advocacy of lower drug pricing. “Policymakers, elected officials, and the news media must be made aware that when these groups act and speak, the influence of Big Pharma money may be at work behind the scenes.” If this is top-of-mind when reading or utilizing the materials and tools they present, it will make you a more educated consumer.
References
The Hidden Hand: Big Pharma’s Influence on Patient Advocacy Groups, Patients for Affordable Drugs, page 5, July 2021.
Ibid, page 3,
Ibid, page 6
Ibid, page 14
Ibid, page 18