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August 29, 2017 0

Today’s healthcare environment – with access to therapy and pricing top of mind, new “right to try” laws, possible legislative changes, and big shifts in the ways that consumers get health information – requires more innovative and thoughtful approaches on how to communicate than ever before. For many pharmaceutical companies, advocacy is a highly promising and rewarding way to connect with patients, families, and communities. Now, some of those efforts are coming under scrutiny.

Advocacy organizations exist to help the people and communities they serve, and can have some impressive reach. One great example is the fact that breast cancer mortality is down 38%, influenced by efforts of Susan G. Komen® to leverage science and education, and directly help patients. And there are numerous reasons that industry stakeholders engage with advocacy groups. Many pharmaceutical companies collaborate with advocacy organizations on non-promotional and unbranded activities to support the community in capacity building, education, and to build advocacy skills. Some have more direct brand objectives in mind, and support advocacy organizations with the goal of getting endorsements from the advocacy organization or from patient ambassadors. Some work with advocacy organizations so that they will recommend specific products to their constituents or to speak with legislators on behalf of companies or products.

Transparency is key to building trust

Trust is essential to building fruitful relationships between the community, advocacy groups, and industry. But lack of transparency can undermine these relationships and may have a negative impact on how the community perceives advocacy organizations and by association pharmaceutical companies. Because trust between them and the communities they serve is key, some advocacy groups have chosen not to accept pharmaceutical funding, so they can say that they are completely outside the influence of industry. The reality, however, is that it is extremely difficult for many advocacy organizations to provide the services and develop the reach and consistency they would like based only on their own public / private support and community fundraising. For this reason advocacy organizations are often open to mutually-beneficial partnerships with industry that ultimately help the patient communities they serve.

But the current level of transparency around funding of advocacy groups has recently been questioned. The New England Journal of Medicine and JAMA Internal Medicine published articles that assessed whether advocacy organizations might have significant conflicts of interest because they accept support from pharmaceutical companies. What the investigators found raises questions about the need for added transparency. According to the New England Journal of Medicine article, 80% of large organizations (annual revenue at least $7.5 million) were found to receive industry support. However fewer than 20% reported specifically how much they received from industry sponsors. More than one-third had an industry executive on their board, and another quarter did not state their board members’ occupations. Only about a quarter published conflict of interest policies, none of which specifically addressed industry influence.

Findings published in JAMA Internal Medicine revealed that two-thirds of smaller organizations (median annual revenue $299,140; interquartile range $70,000 to $1.2 million) were funded by industry and more than 10% received more than 50% of their funding from industry. More than 80% from these smaller groups felt that advocacy organizations should be cognizant of the potential for conflicts of interest, but only about half were highly confident in their organizations’ conflict of interest policies. More than seven percent were consciously aware of pressure to align with corporate interests of donors. The findings illustrate how the majority of large and smaller advocacy organizations receive funding from pharmaceutical companies, but do not have applicable conflict of interest policies to preserve transparency – potentially raising questions about credibility and undermining trust.

Advocacy organizations are not the only ones coming under scrutiny. Since 2013, the federal government has issued subpoenas to a number of pharmaceutical companies to analyze their ties to patient assistance charities. The investigations continue, and now involve many top pharmaceutical stakeholders. These inquiries are similar to those concerning financial ties between industry and physicians and their institutions, and potential conflicts of interest that could influence physicians’ clinical decisions. Financial ties must be disclosed to avoid a potential conflict of interest, or even the appearance of a conflict of interest, so that patients’ welfare remains the primary interest.

Advocacy is stronger with transparency

Should the pharmaceutical companies stop supporting advocacy organizations? Absolutely not. However, all parties should be transparent about their relationships and financial support. Recently, Stat News reported that a pharmaceutical company was found to be a secret funder of a patient advocacy organization that was working to secure more government funding and insurance coverage for treatment. Because this charitable donation was initially concealed, “outing” the company as a financial supporter became the news story. This shifted the focus from the potential positive impact of support for this advocacy group, and possibly diminished the advocacy group’s important role and ability to address a critical community need. Transparency is an effective way to help advocacy groups avoid the pitfalls of implied or actual bias concerning their work, removing a potential barrier for positive impact on the community.

Just as pharmaceutical companies have to publicly disclose payments to physicians, and many physicians are required to disclose any potential conflicts of interest based on industry relationships, it is reasonable to ask advocacy organizations to disclose their industry sponsors and the financial support they receive. This could be similar to a Sunshine Act for advocacy – only hopefully with less complexity! The goal is for all stakeholders to feel confident that everyone is transparent and playing on a level field and lets communities feel positive about the organizations representing them.

Denise Erkkila