What is the Institute for Clinical and Economic Review, and why does ICER matter?

I received this exact question from a patient recently. After all, the Institute for Clinical and Economic Review – aka ICER –  is not a real regulatory body in the true sense.  So, what is all the fuss? They can put out their reports, but who is really going to listen?

Definitely your insurance company. Likely your government, in the form of Medicare and Medicaid.

When they need it most, patients will go to use their insurance and what used to be a series of irritating rejections and appeals is now a strict formulary sidelining new, innovative (often expensive) therapies for older ones. Or in the case of OCA, where an unmet medical need is being filled because there are no treatments for the patients who need it. It goes without saying that not all patients need the new treatments. But the ones that do, need them now.

What can we do as patients to make sure our voices and concerns are heard at the ICER table and any other table attempting to define value on our behalf?

I attended my first Institute for Clinical and Economic Review public meeting last Friday — New England CEPAC in Portland, Maine — for the discussion around a recently approved medicine for PBC liver disease, Obeticholic Acid (OCA). The thing that startled me the most was their opening inclusion of a chart showing healthcare spending in Massachusetts had risen substantially, while spending on first responders, like fire departments, has declined. With all due respect to ICER, this information is not relevant to treating liver disease patients. The budgets of health insurers and city budgets for first responders have nothing to do with each other. Health care seems complicated enough to me without bringing in a random comparison.

ICER makes a huge show of being an independent entity, and yet their entire governing board is from the health insurance industry. A private foundation grant is their major source of funding, but they are being governed overwhelmingly by one industry. One can put all the advisors they want on a website, but the governing board is calling the shots which for me, calls their true independence into question.

It’s hard not to notice how the Institute for Clinical and Economic Review purposefully schedules their meetings around the time new medications for an indication are being approved. ICER’s reports give the insurance industry more negotiating leverage, and in many instances, this could lead to stifling access to the medications before patients who meet the prescribing criteria are even allowed to try it.

I worry that ICER cares most about the bottom line of insurers. Concern for insurance company budgets has a place, but not in a setting claiming to be independent.

ICER’s selection of patients to include in their public meeting discussions is arbitrary and without any real thought to the insight and patient input necessary to be truly independent. In the case of OCA, ICER found a local patient who was a lovely person, but did not address the matter under discussion because she was not a patient who needed the medication being evaluated. If the Institute for Clinical and Economic Review had a true concern for the patient – they would have worked a little harder to get one in the room who had either taken OCA on a clinical trial, or at the very least — fit the criteria to receive the medication and for whom this medication could make a real difference in their life.

ICER is looking at one side of the prism, narrowly focused on soulless backroom number crunching to solve one portion of a larger problem. There is a pessimism about their process. By using a metric like the QALY (Quality Adjusted Life Year) that places a value of less than one on a living, breathing human being — it shows they are not looking at the value of a human life in the same way most of us do. Being diagnosed with a disease should not make a person have less value.

At Patients Rising we are full of optimism about the future of healthcare. We believe when a think tank is formed that focuses on cutting the waste, streamlining the processes and helping patients get all facets of the care they need when they need it – costs will go down. The problem with this solution is everyone has to make sacrifices for it to work. Everyone has to show their cards and not hide behind the banner of an “independent organization.”

As a patient advocate, I am the first one to acknowledge that the United States healthcare system is a giant albatross of confusion. The price is not the real price of ANYTHING. Not just drugs, but tests and procedures, even doctors visits! Everything depends on who is paying the bill and the person almost always caught in the crossfire is the patient. There is not much transparency anywhere in the system.

Patients are the voices of value that must rise and be heard.

Roads and bridges are not going to be built because patients are denied treatments. Fire Departments will not get shiny new equipment. Teachers will not get raises. The Institute for Clinical and Economic Review is flat out wrong when it makes these comparisons. We do not have a national health system where budget from other areas can be spent on health, or vice versa.

This is a backwards theory and one we need to stop before it takes hold.

Let’s all rise on behalf of patients and try to be as innovative with our economic solutions as we are with our science.

Note: Click here to read the full transcript of my public comments given at the ICER meeting in Portland, Maine on July 15th.

About the Author

Terry Wilcox is the Co-Founder and Executive Director of Patients Rising and Patients Rising NOW.  She is the former Executive and Creative Director of Vital Options International and the creator of the web series Understanding Cancer. Her passion is challenging the entire health care system to think broadly about the system challenges while always remaining focused on the patient and the sanctity of their relationship with their doctor.