Patient Advocacy Organizations Address ICER Report


Patients Rising, a non-profit patient advocacy organization, and Aimed Alliance, a non-profit that promotes the improvement of health care in the United States, have added to the growing criticism of ICER’s recently released report on the value of different myeloma drugs.

In a briefing, key leaders of Patient Rising and Allied Alliance discussed how the value-framework outlined by ICER poses a risk to patients by limiting spending on new and innovative treatments for cancer and other serious diseases.


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“ICER’s limits on access to new therapeutics would result in 44,000 fewer lives saved for patients with multiple myeloma over a five year period,” said Robert Goldberg, PhD, of the Center for Medicine in the Public Interest who co-hosted the briefing. “Further, ICER’s proposed price cuts would eliminate 60 percent of drug discovery, having a huge impact on the future of the fight against cancer.”

ICER has claimed that it devised its proposals with the intent of managing the unsustainable growth of health care costs. However, Patients Rising has long held that all discussions of health care spending should look at health care as a whole and not just be based on rhetoric or targeted at new therapies. ,

“Any proposal must put patients first,” said Jonathan Wilcox, co-founder and policy director of Patients Rising. “The ICER plan will simply result in healthcare rationing. We will oppose any plan that replaces medical decisions with a mathematic formula.”

Still, ICER has shown no signs of slowing down, saying that it plans to release other value-frameworks that cover lung cancer and multiple sclerosis. Many worry that such frameworks could impede the progress that has been made in these disease states, such as myeloma, which cannot be cured, but where significant progress has been made in extending remissions through a growing arsenal of new, innovative treatments.

“As a six year survivor, I outlived the five-year prognosis I was given when I was diagnosed thanks to multiple treatments,” said Tom Hardy, a patient with myeloma. “But on my way to the briefing today I was told the cancer is coming back. I don’t want ICER or anyone else to curtail my treatment options.”

Nine year survivor John W Killip, DDS, echoed Mr Hardy’s sentiments, asking, “where would I be if they based the value of my treatment on five-year survival? It is inappropriate that ICER or anyone challenge the value of my treatment to me, my family, or my continued ability to generate income!”

The groups concluded that there are other, more effective ways to save costs that do not impede patients’ access to treatment, and that these tactics should be pursued in lieu of other, similar value frameworks.