First of all, my thanks for the opportunity to address you today. It is appreciated. Patients Rising was formed to stand for patients. To advocate for their rights. To fight for their access to the medications they need. And to tell the truth about health care.

We’re here today because patients understand what’s at stake. If there’s one thing patients know it’s a threat to their health and well-being. They know the application of value frameworks, complicated formulas and detailed mathematics aren’t designed to help them increase access to their medications And compelling studies are now coming to light that frameworks may well result in tens of thousands of patients who won’t receive their treatments.

Of course the cost of health care is a concern. Of course it is.

Data show that this country spends twice as much on hospital costs and physician costs than the costs of medicine … and yet, patients get less coverage and pay more out of pocket for their medicines.

Does ICER suggest a framework to bring this imbalance more in line? No.

Does ICER recommend a framework to invest more creatively in something that will actually save lives? No.

ICER suggests one remedy: A ceiling on treatments and a cap on investment in patient medicine.

Has this think tank stopped thinking?

Or does it prefer politicking?

Not two weeks ago: Sarah Emond, ICER’s Chief Operating Officer said: “If we pay for Hep C drugs then we will have to lay off teachers and close schools.”

How dare any organization promote the idea that we as a society have to choose between young people and sick people … or between innovation and education.

In a conversation last week, Dr. Pearson told me that, as a medical doctor, if he were treating a patient and was evaluating two medications of identical effectiveness, he would feel a moral obligation to the system and the patient to prescribe the less expensive one.


But doctor: Is the corollary of your anecdote not also true?

If in your clinical judgment a more-costly medication would be more-effective would you not feel a moral obligation to prescribe that one?

Your own value frameworks would stand in your way.

As some may know, our organization sponsors a patient in his advocacy and his endeavors. His name is Don Wright. Don is 75 years old. He has multiple myeloma. He has just completed his 96th marathon … all with multiple myeloma. In 2003, he was diagnosed and given an optimistic survival window of 3-5 years. That was 13 years ago. I wish you could see the thousands of patients and people who he has touched – and who have reached out to touch him. You might realize Don has a value that no framework can capture.

Multiple myeloma – the disease that you target today – is incurable. But it is treatable. Don and every other multiple myeloma patient relies on a pipeline of new medications to keep them alive. Only innovation can hope to treat them. Only innovation can hope to cure them. ICER’s value frameworks hold the serious prospect of price controls on medicine, and the treatment controls on patients that go right along with them. Reduced investment in innovation would follow as a course of simple logic … a dire determination for every patient who has multiple myeloma.

We call on this organization to reconsider its current course. To turn away from waging war on one sector of our health care system and acting as an agent for any other. If you really stand for solving medical problems, then you must review all industries holistically to offer true clinical and economic review. I understand that ICER has already announced its next target – the medicines that treat Americans with non-small cell lung cancer.

Look at this room. Look at these patients. Listen to what they’re feeling and understand what they’re fighting.

If you propose another value framework like this one you won’t have to look for patients. We and they will be right there.

Thank you very much.

This public comment was delivered on May 26, 2016 at the ICER review of multiple myeloma therapies in St. Louis.