To Be Clear: 6 Ways Pharma Should Uphold Financial Transparency with Patient Advocates
Early this year, two papers published in JAMA and BMJ reported on inconsistent financial disclosure practices among non-profit patient advocacy organizations and drug manufacturers. This is the latest in an ongoing dialogue on developing stronger policies on disclosure and greater transparency to avoid conflicts of interest that may harm patients.
For years, groups like the Kaiser Health Network have been sounding the alarm on whether these groups have the interests of patients or Big Pharma in mind. In 2018, KHN published a database called Pre$cription For Power to house information on the financial relationships between Big Pharma and patient advocacy organizations. KHN found that fewer than half of the pharma companies in the database disclosed their company giving.
The reality is that industry donations provide pivotal funding for important support services, such as patient hotlines, peer-to-peer mentoring, financial assistance, and disease education. But excess funding has been known to have negative consequences for patients. For example, this same conflict of interest had a devastating effect on the opioid epidemic—according to a congressional report on the financial connection between opioid manufacturers and advocacy groups—and potentially contributed to widespread adoption of addictive opioids.
There are no official rules for how to disclose financial giving. At JPA, we counsel our pharmaceutical clients to take active steps toward transparency and partner with the patient community in mutually-beneficial ways. Our philosophy is rooted in respecting the independence of patient advocacy organizations and supporting meaningful patient education.
Some best practices for transparency and accountability with financial giving include:
1. Avoid being the sole company to offer financial support to a nonprofit group. Sometimes in the rare disease space, this is unavoidable, but in those instances, ensure that company support is not conditional on being the only donor. Similarly, avoid contributing more than 50% of a nonprofit group’s revenue per year, to not have “majority share” in any one group.
2. Take the initiative to introduce advocacy groups to potential new funders. Consider potential non-pharma sources of revenue for the group, such as sponsorships from corporations whose employees may be impacted by a specific disease. Not only will you diversify resources, but you’ll support the future longevity of the nonprofit organization.
3. Create financial compensation terms that adhere to fair market value (FMV) when partnering directly with advocates and patients. There is no official system in place for financial compensation of patient partners, but patients provide tangible value and should be fairly compensated. An agency partner can help you calculate what patients are giving up supporting your efforts – time with their family, friends and jobs.
4. Be the frontrunner in transparency by joining the growing number of pharma companies that are proactively disclosing their financial contributions in corporate responsibility reports. This process is similar to ways in which the industry is already required to report payments to physicians through the Sunshine Act. Public disclosure of advocacy giving will have the added benefit of reminding your employees their work is contributing to a meaningful impact in the lives of patients.
5. Level the playing field by establishing a grant program with guidelines for giving that reflect the company priorities and values. This also ensures that advocacy giving granted to non-profits is regulated and reconciled (meaning, there’s justification the funds were put to the intended use).
6. Reference existing industry guidelines, such as the PhRMA Principles on Interactions with Patient Organizations and BIO Guiding Principles for Interaction with Patient Advocacy Organizations.
As the dialogue continues, we can anticipate more measures (potentially even legislation) to ensure transparency and accountability between patient advocacy groups and drug manufacturers. But it’s never too soon to break from the fray and start implementing these best practices for financial transparency with advocates now.
Carolyn Sobczyk is a Vice President at JPA Health where she fosters the development of strategic partnerships with the advocacy community on behalf of her biopharma clients.