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:
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 AGAIN, OFF AGAIN: PATIENT GROUPS AND DRUG MAKERS
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.
►RESEARCH FUNDING GETS A VERY CLOSE LOOK
Beyond Exondys 51, the NIH and its funding were front and center this week for a few other reasons:
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