The Ethics of the Market Access Debate

At the core of the market access conversation lies the question of value. How much do we value two years added to the end of an 80-year-old’s life? How do we put a dollar amount on a medicine that prevents a rare disease patient, who may only live to age 20 regardless of receiving treatment, from losing her ability to walk?

How can we define metrics to measure the cost of a child with a chronic illness to a family unit, a healthcare system, a society? How much more revenue would be generated if that child could become a productive adult and if his family members could be free to contribute to society rather than spend time, resources, effort, and emotion on taking care of his illness?

Is it worthwhile to invest hundreds of millions of dollars to develop a treatment that will only help a thousand people? Is that treatment more valuable if it holds the key to understanding a mechanism of action that could be applied to larger disease areas and help a million people?

We live in a world bound by limited resources, so it’s natural to ask these questions as we try to determine how much of our global wealth should be invested in healthcare, and how that investment can be maximized in terms of quality of life for individuals and for society.

But the reason these questions are so difficult to answer is that the value of human lives, wellbeing, and community cannot and should not be measured by dollars and data. Is a treatment that saves a hundred lives truly more valuable than a treatment that only saves ten?

“Imagine one of those ten were your son,” said Rogerio Vivaldi, head of Genzyme’s Rare Disease business unit, in a 2013 BIO International Convention panel entitled Orphan and Rare Diseases: Closing Distances in Understanding Larger Disease Mechanisms. “If your answer changes when the question becomes personal, then the framework of this conversation is wrong.”

When the question becomes personal, we recognize that the value of one human life is infinite – and that this value is more than only the economic value to society. When the person whose life is in danger is our own son, we are close enough to him to comprehend his true value as opposed to interacting with him as a data point or as a nameless face in a sea of other faces.

When Genzyme developed the first enzyme replacement therapy for a rare disease in the early 1990s, systems were not yet in place to build a sustainable business around treatments for such small patient populations. But the question was not, “Is there a strong enough value proposition for this therapy?” The true value of the treatment was seen clearly in the three-year-old boy whose swollen spleen decreased to a normal size while in the clinical trial. Instead, the question was, “How can we create a system that won’t prevent children like him from getting a treatment that could allow them to live normal lives?”

The starting point of the market access debate should be, “How can we build a system that will work for those who need it?” not “Can society afford to help those who need it?”

Jessica Colund is a Senior Specialist for Corporate Communications with Genzyme Corporation.

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