RARE Daily

Turning Good Thoughts into Good Actions

January 10, 2020

In September, Gallup’s annual ranking of the public perception of 25 industries found that the pharmaceutical industry had become the most poorly regarded sector by Americans.

Gallup found that Americans were twice as likely to rate drug companies negatively rather than positively. The industry fell from a positive rating of +4 at the end of 2014 to a score of -31, pushing the federal government out of the bottom spot.

Given the stream of negative news for the industry from the opioid crisis to controversy over drug pricing and the industry’s aggressive spending on lobbying, such results shouldn’t be shocking. On the other hand, it is remarkable that an industry that works to prevent, treat, and cure diseases can find itself in this situation.

Earlier this week, 215 biopharmaceutical executives, venture capitalists, and others involved in the industry signed a letter that ran as an opinion piece in Stat in which they made a public affirmation of a “new commitment to patients” and laid out a set of core principals and actions. It’s notable that four of the six organizers of the letter—Amicus CEO John Crowley, Ovid Therapeutics CEO Jeremy Levin, Global Blood Therapeutics CEO Ted Love, and Alnylam Pharmaceuticals CEO John Maraganore represent rare disease therapeutics companies.

While this appears to be a sincere effort to make a commitment to patient access and a welcome first step, there are reasons to question how meaningful it will prove. In the end, it may depend on the patient community to ensure their words are backed by action.  

First, there is the disclaimer that runs at the bottom of the letter cautioning “The signatures above do not necessarily reflect the policies or positions of the agencies, organizations, employers, or companies with which the signers are affiliated.”

There is also a noticeable absence of Big Pharma and Big Biotech executives. BioCentury reported that the CEOs who organized the effort invited them to sign the letter but they passed. It’s worth noting that in 2018, the top ten players in the industry accounted for $345.4 billion in prescription drug sales, more than 40 percent of the total $827.8 in sales the industry made, according to EvaluatePharma. Economic power is heavily skewed toward the biggest companies.

Much of the core principles and actions in the letter should be noncontroversial. They commit to pricing medicines that reflect innovation and value, and commit to achieve broad patient access. They say they will work with policymakers, pharmacy benefit managers, payers, and providers to find ways to eliminate copays and deductibles for patients. And they say they will collaborate with those same stakeholders to ensure patients get access to the drugs they need.

They also express a commitment to patient advocacy in how they build and operate their companies and to only invest in novel therapies that address unmet patient needs.

Perhaps the most daring element of the statement is the last of the nine points. It reads, “We will speak out about and not tolerate companies and other stakeholders who abuse this commitment to patients, and who abuse policies aimed at fairly rewarding innovation.”

The biopharmaceutical industry has been derelict in guarding its reputation. Part of the problem is the failure of the industry to call out bad actors except in the most egregious of circumstances where the target is weak. This, however, is the one point that the signers as individuals are in the best position to follow through on.

Jennifer Miller, assistant professor at the Yale University School of Medicine and founder of Bioethics International, which benchmarks the ethics of pharmaceutical companies, thought the letter was a positive development, but not enough by itself.

“Any public commitment to ethics, access, integrity, and responsibility is important,” she said. “Commitments are helpful, but insufficient on their own,” she said. “It’s generally helpful to back up a commitment with measures, metrics, and public reporting so you have responsibility.”

That suggests an important role for the patient community to play. It can help give shape to these commitments by helping develop measures and reporting to turn good thoughts into good actions.

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