Expect more transparency around pharma's advocacy group partnerships in 2019

Doctor with patient
Patient advocacy groups came under fire for payments from pharma companies this year, and next year, more transparency is likely. (Getty/isayildiz)

Advocacy groups and pharma companies often work hand in hand, especially in rare diseases. This year, however, saw some of the shine wear off of those close relationships as politicians and the media raised red flags over payments from pharma companies.

In February, Missouri Sen. Claire McCaskill (D) dropped a report pointing out five opioid drugmakers who paid more than $10 million to advocacy groups and doctors and accused the groups of being “cheerleaders” for opioids. Then in April, Kaiser Health News debuted its Prescription for Power database tracking 12,000 donations totaling $1.6 million from pharma to some 1,200 advocacy groups in the past year. Other national media jumped on board with coverage, and by the summer, McCaskill had submitted a proposed bill that would force drugmakers to disclose payments to advocacy groups.

On the other hand, close working relationships between pharma and advocacy groups bore distinct fruit this year. Educational and awareness campaigns created jointly between pharma and groups proliferated. Cancer.com, developed by Johnson & Johnson’s Janssen Oncology unit along with three patient cancer groups, launched with a wide range of resources including mobile tools and resource locators. In an awareness effort, Alnylam Pharmaceuticals put the spotlight on one extended family in its new disease awareness campaign for hereditary ATTR amyloidosis.

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The growing role this year of pharma ambassadors in social media talking about a variety of conditions has helped raised awareness and normalized what can be isolating conditions. Meeting real people with real conditions—as in the Promius Pharma's skin conditions campaign featuring a range of real patients with different issues or in ViiV Healthcare’s Triumeq TV campaign with five people who are living with HIV talking about their diagnoses and treatment—helps with de-stigmatization and ultimately improves the outlook for patients.

The question now is whether advocacy groups and patients get spooked by the extra oversight and attention. Maybe, but the answer is in transparency and balance. According to the National Institutes of Health, between 30% and 71% of patient advocacy organizations get funding from pharma—and that’s not going to change overnight.

However, what will likely emerge next year is more transparency and accountability between the two sides.

As a Syneos Health blog post noted about the uproar: "This is not a signal for pharmaceutical companies to hit pause on engaging with advocacy groups or professional societies. Some of the most powerful healthcare initiatives have stemmed from industry-advocacy partnerships, especially when industry brings both insights and funding to the table in order to tackle complex challenges that ultimately improve outcomes for patients. Instead of seeing these widespread calls for transparency as a reason to retreat, it is wiser to view them as a reminder of two simple truths: transparency is the key to trust and trust is the most important currency we have as an industry."

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