As advocates working with and for patients, we are concerned by attempts to “rank” treatments for deadly cancers in any way that either interferes with clinical decision-making by doctors or seeks to impose a mathematical formula to drive down cost and ignore inherent patient value.
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This is, in our view, an “original sin” of poor public policy. If one begins with a belief that America must cut medical access costs right now and right away, patients will be the first ones hurt – every time.
We welcome any good faith effort to scientifically and clinically evaluate evidence regarding the value of both tests and treatments, and to move that evidence into action first and foremost to improve patient care.
That is why we read with great interest the inclusion of a relatively new player in the innovation space: The Institute for Clinical and Economic Review (ICER), a Boston-based group that humbly describes itself as “A trusted non-profit organization.”
But so far, we have a measure of concern about ICER’s latest creation: a “value framework” to directly impact, address and, ultimately, set the prices of medications.
Price is an important factor, but we have had extensive concerns about related efforts by ASCO and NCCN to assign numerical rankings and grade formulas to address the value vs. cost issue. Even with the best of intentions, these frameworks take direct and, we think, potentially deadly aim at the sanctity of the doctor-patient relationship and the moral mandate for patient access to essential and appropriate treatments.
While ICER is crunching its numbers, we hope it will avoid stiff preconditions and rigid assumptions that impose a simplistic conclusion about the need to drain dollars out of the current system. Isn’t a think tank supposed to question stale mindsets?
It is especially disquieting that ICER is arranging a value framework for multiple myeloma, not only for the reasons mentioned above, but because this disease strikes particularly close to our hearts and that of our friends.
We’re sponsoring the great Don Wright – the running man from Minnesota – who has just completed his 92nd marathon in the last 13 years as an active multiple myeloma patient. Don and thousands of people like him are – literally – alive today because of breathtaking innovations in the development of medical therapies.
This is particularly true of multiple myeloma, because effective treatments were a very new idea when he was diagnosed and told he would live only 3-5 years. No math calculation could have predicted he’d be alive today, let alone be able to run marathons while undergoing treatment.
As a result, all across this country, people have learned of Don’s story, been touched by his courage and, in turn, sought to touch him along every one of his 92 marathons’ 26 miles.
This is, ultimately, why ICER’s value frameworks are currently falling short, just as all the others before it.
Where’s the value framework for him? Is a man like Don, over the age of 70 with multiple myeloma (for which there is no current cure) worth the full investment our health care system can offer him, his wife of 50 years, his children and grandchildren and colleagues at work? No value framework – not ASCO’s not NCCN’s and not ICER’s – will ever say yes. That’s why we fight.
And no matter how many millions of dollars ICER can raise from billionaires’ foundations that believe there’s an economic benefit to controlling access to medical treatments, the patient perspective must prevail.
We call on ICER to introduce an entirely new framework that will never seek to interfere with the sanctity of the doctor-patient relationship and will begin by placing the patient not at the muddled center of their view – but at the forefront, the vanguard and the very top.
Jonathan Wilcox is the Co-Founder and Policy Director of Patients Rising and Patients Rising NOW. He is a fellow with the University of Southern California’s Unruh Institute of Politics and was a speechwriter for California Gov. Pete Wilson (R).
