A Moral Responsibility: Why It Matters How We Talk About What We Do in Health Care

Today, Gleevec® (Glivec® outside the U.S.) is remembered as a medical milestone, a targeted therapy that changed not only the way we treat chronic myelogenous leukemia, but the way that we approached precision medicine across the board.

But in the years leading up to the medicine’s 2001 approval, it was a milestone in how companies dealt with some of the moral challenges of bringing a drug to market. Geoffrey Cooke, global head of external and patient relations for Novartis, recently told the story at the annual Healthcare Businesswomen’s Association conference in Philadelphia.

Cooke, speaking on a panel on global access, sketched out the issue: in an early trial, the drug that would later be known as Gleevec (note: not represented by W2O) showed significant promise to, at the very least, potentially extend life in chronic myeloid leukemia.  Shortly after the announcement of these early data, Novartis began to receive requests for the still very-much-investigational compound from obscure places around the world.

That created instant tension. What might the impact be of giving an unapproved drug outside of a clinical trial? There were scientific questions, regulatory questions, moral questions.

Novartis’ choice was to create the Glivec® International Patient Assistance Program (GIPAP), which may have been the first named patient program for compassionate use.  At the time, Cooke said there were critics and naysayers, but, from the top down, it was clear that those at Novartis felt they had “a moral responsibility” to make the drug – then known as imatinib — available to patients, no matter where those patients lived.

Now, there were many different words that Cooke could have used to describe Novartis’ decision-making, ways of sanitizing or “corporatizing” a compassionate use program to make it friendly for review committees and risk-averse stakeholders. But Cooke minced no words. He said access was a “moral responsibility,” a powerful and fully authentic statement.  I wanted to stand and cheer.

I’ve worked in health care for a long time.  And, like many others, I did it because I knew that science and medicine were uniquely important levers to change the world, and I wanted to be a part of that.  I have seen day in and day out that most everyone I have met in this field is trying to do good in the world.  We have a responsibility to do our best each day because we touch very real lives.

We have a favorite statistic here at W2O across the health care practice:  9 percent of Americans believe that pharma puts patients above profits (Harris poll, 2017), while a whopping 15 percent of Americans think bigfoot is real (Public Policy Polling, 2013). What have we done that more people believe in Sasquatch than in patient-centric biopharma companies?

The health care industry, like all others, isn’t perfect.  The system here in the United States and those systems used around the world aren’t perfect. There are unquestionably bad actors who take advantage of the complexities inherent in health care.  I won’t – and can’t – even try to justify some of the actions that have happened.

Because of these bad actors and because of the industry’s imperfections, we have become too afraid that we will cross a legal or ethical line, or that we no longer have the credibility to speak simple truths.  That has sanitized what we say, obscuring our passion for helping people and eliminating the emotions – hope, fear, frustration, curiosity, elation – that drives this industry forward.

As communicators and marketers, we have the opportunity to step up and be the conscience of the industry.  We have the power and ability to help create the real voices of the real people who are working hard each day to improve lives and patient care. We have a responsibility to bring to life the importance of the work that is being done in pharma, in biotech, in digital health and across the spectrum of health care.

Emily Poe
Emily Poe
Global Practice Leader, Healthcare Communications
Tags:

What we're saying in our blog

HealthCare, Data, and the New, Unexpected Conventions
A Quick Look at Blockchain in Healthcare