Patients beware. Two things are happening right now in medicine, and they can’t coexist.
While the White House has proposed a “Moonshot” to advance a cure for cancer, presidential candidates, policymakers, regulators and activists are lining up behind an agenda that would stifle medical innovation and scrub this launch before it ever gets off the ground. Specifically, they’re demanding so-called “value frameworks” – complicated medical and math formulas that rate new and existing therapeutics based on dollars and cents rather than medical effectiveness.
One such framework for a type of blood cancer is being rolled out on April 7 by the Boston-based Institute for Clinical and Economic Review. This development represents a direct threat to the very thing that patients need most – medical innovation.
The advent of precision and personalized medicine, which offers treatment and cures that are targeted, specific and delivered more efficiently, is now seen as a fiscal burden by an emerging public relations campaign that places the cost of medicines at the top of consideration. Promising and proven treatments are being pronounced as too expensive, even if doctors judge they can keep patients healthy and alive. The ultimate goal is to impose one-size-fits-all treatment guidelines – the cheaper the better.
A war on prices might make sense for rival pizza parlors or the local Best Buy. When it comes to sick people and their medicine, it’s nothing short of dangerous – or deadly.
Any methodology that attempts to rank and interpret whether or not you should be given a drug recommended by your doctor is placing mathematical formula above medical science. And every patient for whom the arithmetic doesn’t add up knows it is an algorithm specifically targeting them.
Case in point: The Boston-based Institute for Clinical and Economic Review (ICER), which humbly describes itself as “A trusted non-profit organization” that “Evaluates the evidence on the value of medical tests, treatments, and delivery system innovations and moves that evidence into action to improve patient care and control costs.”
This sounds benign enough, and we need good-faith efforts to scientifically and clinically measure the value of tests and treatments and move that evidence into action to improve patient care. But it is alarming that ICER’s major value framework of 2016 is for the blood cancer multiple myeloma. It is probably the last disease that should be put under this kind of harsh economic interrogation.
Here’s why. We sponsor a Minnesota man named Don Wright, 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 remarkable innovations in the development of medical therapies.
This is particularly true of multiple myeloma, because effective treatments were a very new idea when Don was given an optimistic prognosis of three to five years. No math calculation could have predicted he’d be alive today, let alone be able to run marathons while undergoing treatment. Only medical innovation could achieve that.
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 – including Boston’s signature race in 2004.
As extraordinary as his racing is, however, it only illustrates a larger point. The breakthrough therapies that keep Don Wright running are first keeping him living, working, paying taxes and caring for his family. Where’s the value framework for that?
Is a man like him, over the age of 70 with a disease for which there is no current cure, worth the full investment our health care system can offer? What about for his wife of 52 years, his children, grandchildren and colleagues at work? No abacus, calculator or think tank that’s programmed to reduce how much we invest in patients will ever say yes.
Instead of value frameworks, we must fight for the miracles of medical innovation. Not unlike NASA’s Mercury program that reached the stars, or the Apollo missions that put a man on the moon, this undertaking will be expensive, time-consuming and a journey into the great unknown with false starts, long nights and no easy guarantees of success.
All patients want is a chance to be along for the ride.