TWTW team spent this weekend doing some spring cleaning in the hopes that it would bring us East Coasters some, well, spring…Fingers crossed that a little wishful thinking and the removal of some pretty major dust bunnies will get the warm weather vibes coming our way.

Despite rain, sleet, or yes, even more snow, it was another busy week on the healthcare front:

  • HIPAA hiccup? Following Amazon’s footsteps into the healthcare industry, it appears Facebook has been in talks with top hospitals in an attempt to obtain patient data. However, that initiative appears to be on hold since Facebook is a little, uh, busy. Meanwhile, CEO Mark Zuckerberg is getting ready for his close up, DC-style. MZ is set to testify in front of Congress this Wednesday.
  • Breaking the ICE(R). The Institute for Clinical and Economic Review (ICER) announced they will provide executable versions of their draft economic models to drug companies during their review process, as part of a new pilot program. ICER stated that “manufacturers may be better equipped to provide valuable feedback during the public comment period that follows the release of an ICER draft evidence report.” However, the access will cost ‘em: the models are only available for a fee.
  • Out of Office. Advertisers continued to pull out of Fox’s The Ingraham Angle, following host Lauran Ingraham’s remarks about Parkland school shooting survivor David Hogg. Ingraham then took a week vacation, which the network insists was already planned.

A few stories have the TWTW team thinking about the ongoing push for transparency in the healthcare industry. Read on for our thoughts about how patient advocacy groups, research funding and drug companies are all impacted by this trend.


On Wednesday, the U.S. Department of Health and Human Services received a letter asking that they “take action to lower the price of eteplirsen,” also known as Exondys 51, Sarepta’s treatment for Duchenne muscular dystrophy. The letter, signed by six patient advocacy groups, asserted that the patents for the drug (owned/ licensed by Sarepta ) did not disclose that federal funding (from the NIH) was used to develop the treatment.  The groups suggested that the government should take the opportunity “to take title to at least five relevant Exondys 51 patents, and to use the ownership of the patents as leverage to lower the price.”

The letter is a powerful example of just how tense the relationship between patient groups and drug companies can get when it comes to pricing. A recent study of patient groups across the U.S. showed that last year, less than half had a favorable view of drug companies overall. Even worse were the groups’ responses about drug pricing. The study found that “Just 13 percent believe pharmaceutical companies do an excellent or good job of disclosing or explaining their pricing policies.”

But this issue is not so black-and-white. While some recent research and public actions suggest discord, funding records suggest otherwise. Recent reporting from Kaiser Health spotlights a funding database that shows in 2015, 14 companies provided $116 million to patient groups. That was nearly double what the companies spent on federal lobbying efforts.


A surge in recent reporting and donation tracking suggests a desire from the public for more transparency on the connection between drug makers and advocacy groups. The pressure is on for them to “define their relationship.” But right now, it seems the best answer is “it’s complicated.” And it really is. While writing this, the TWTW team did some of our own digging and found that one of the patient groups that signed the letter to Sarepta also showed up in the Kaiser Health database.

So how can both sides work to be more transparent, while sorting out what the relationship should really be? Start by keeping in mind that, though they use different tools, both patient groups and drug makers have the shared mission of improving patients’ lives. Focus on the initiatives and goals that provide real, meaningful value and support to patients. And if the relationship is in any way financial, make sure both sides agree on what the funding is for, and clearly communicate that purpose to the general public.

And when it comes to pricing, companies should establish strong and authentic relationships with patient groups to set realistic expectations early on. If you’re not sure how to do that, give us a call.


Beyond Exondys 51, the NIH and its funding were front and center this week for a few other reasons:

  • Last month, Wired and the New York Times reported on a relationship between the NIH and the alcohol industry. STAT dug deeper, and reported this week that the relationship went further than originally thought: “the director of the NIH's alcohol abuse branch, George Koob, told an alcohol industry lobbying group in 2014 that he wouldn't fund studies on the impact of advertising by a researcher whose work the industry didn't like.”
  • Meanwhile, the NIH announced this week that it would double its budget for research into opioids, from $600 million to $1.1 billion, in an effort to find “safer ways to treat pain and better ways to treat addiction and abuse disorders.”

At the core of both these stories is an ethical question: what should the role of industry be in funding research done by federal and non-profit groups? It seems the NIH really wants an answer: the agency held a committee meeting on Friday afternoon to discuss the ethics around partnering with drug makers on research on the opioid epidemic.


Just like patient groups and drug makers, there’s nothing straightforward about the relationship between drug makers and researchers. On one hand, using company funds to conduct research that could directly impact those companies’ business seems like an ethics slippery slope. That goes double in the opioid debate, where some manufacturers are currently being sued for their role in the epidemic. On the other hand, companies can offer meaningful resources and support for important public health research.

While the outcome of Friday’s meeting is still pending, that doesn’t mean drug makers can’t start taking action. We recommend increasing effective communication around research funding. Make information about the research your company is (or isn’t) funding readily available; media will find it either way. Beyond that, be sure to contextualize how that money is being utilized, and the safeguards put in place to ensure funding does not have any untoward or unintended impact on public health research.

Until next week,

-  The Reputation & Risk Management Practice @ Syneos Health Communications

About the Author:

We are a team of healthcare communicators, policy-shapers and crisis response specialists. Drawing upon professional experiences from Congress, CMS, HHS, hospitals, and health technology—and our collective work in rare disease, oncology, diabetes, gene therapy, pain management and infectious disease—we provide unique solutions to the evolving messaging challenges in today’s healthcare industry. We support our clients with evidence-based approaches to preventing pricing pushback, protecting brands from modern activism, establishing and communicating clear policies surrounding expanded access to medicines, and a proactive approach to value frameworks. Our offerings also include product safety, litigation, regulatory risks, ex-U.S. considerations and policymaker investigations.