The relationships between patient advocacy groups and pharmaceutical companies have always been complicated, and they’re only growing more so. Ongoing debates over rising drug costs, the availability of generic drugs and the role of opioid manufacturers in the overdose epidemic, among other issues, are forcing advocates to defend the support they receive from pharma companies on multiple fronts.
The latest salvo from Capitol Hill came in June, when Sen. Claire McCaskill (D-Mo.) introduced a bill that would require drug manufacturers to disclose their donations to advocacy groups and professional societies. Advocates also were put on the defensive when Kaiser Health News published an expansive database in April of industry funding of advocacy groups. KHN reported that 14 pharmaceutical companies contributed a total of $116 million to advocacy groups in 2015, nearly double their lobbying expenditures that same year.
The public’s declining trust in the pharmaceutical industry complicates matters further. According to the 2018 Edelman Trust Barometer, pharmaceutical companies are trusted by just 38 percent of the U.S. population, a staggering 13 percent decline from last year’s study. This makes pharma companies the least-trusted healthcare industry in the U.S., far lower than hospitals/clinics (70 percent trust), consumer health (56 percent), biotech/life sciences (55 percent) and insurance (46 percent).
How is the advocacy community responding? The policies and practices of some leading patient organizations provide useful guidance for advocates and pharma companies alike:
Increased scrutiny is inevitable, so get out ahead of it. Advocates know the criticism won’t end anytime soon, so they’ve worked to protect themselves when the heat rises. Pharma might take a page from this book. For example, the National Health Council (NHC), which represents more than 50 advocacy groups nationwide, requires its members to meet 38 standards of accountability and ethical practice that apply to areas including governance, fundraising, transparency and accountability, and accounting and reporting. Advocacy groups must meet 10 minimum standards just to be considered for NHC membership.
Other groups demonstrate accountability through internal policies and procedures. Fight Colorectal Cancer emphasizes that content development is not led by sponsors or donors; rather, content is written and edited by the organization’s staff and reviewed by its medical advisory board. Mental Health America underscores that its programs and initiatives are developed and led entirely in-house, and that it seeks financial support only after initial ideas are fully developed.
Focus on transparency. Advocates have drafted publicly available policies that govern their financial relationships with pharmaceutical companies and other corporations. The Cancer Support Community and the Celiac Disease Foundation are two groups that disclose their corporate policies and parameters for accepting industry contributions. The Patient Advocate Foundation website goes further than most, with disclaimers for each of its three patient service programs, including prescription co-pay assistance.
As advocates focus increasingly on transparency in their relationships with industry, they’ll be looking for pharma to do the same in return, such as by releasing more information about which advocacy groups and programs a company will or won’t fund, and how far a company will go in contributing to content and programming. In addition, advocates facing tough questions about their positions on drug costs may press pharma companies to be more transparent about drug prices.
Prepare for change. The growing involvement of patients in research and drug development may further complicate relationships between advocates and industry. Some advocates say the increasing adoption of patient centricity makes it more important than ever for pharma companies to ensure their staff respect the boundaries necessary to keep industry relationships with advocacy groups at arm’s-length.
Many advocates also are preparing for the possibility that pharma companies could reduce their support if drug prices are forced down. Such a scenario would put financial pressure on advocacy groups that are more reliant on industry funding, potentially leading to consolidation within the advocacy community.
Play the long game. Advocates charge that media coverage casts any industry contribution to an advocacy group in a questionable light. They say comparing industry support of patient assistance and public education programs with pharma’s lobbying expenditures, as KHN did with its database, is fundamentally misleading.
Advocates also complain they are all maligned when the media reports on the questionable practices of a small number of individual groups. Some advocates say they want to begin calling out the “bad actors” in the hopes that reporters will distinguish those groups from the broader advocacy community. Advocates are tired of playing defense in response to each new report about industry support of their organizations. They know a long-term process of educating reporters about their programs and funding sources could prove beneficial when the next crisis hits.
In general, patient advocates are working hard to ensure they manage industry partnerships for the good of their members. They’ll need pharma to do its part so that the reputational risks of such relationships don’t overcome the benefits to patients.
Steve Weiss is senior vice president, Washington, D.C.