What Patients Want from ICER

October 28, 2019

The Institute for Clinical and Economic Review is getting an earful from patient advocates. 

The controversial health economics organization welcomed feedback this month on its value assessment framework, the methods and metrics it uses to calculate new therapies’ cost-effectiveness. ICER’s reports can influence health plans’ decisions about whether to cover innovative drugs, so patients have a lot on the line.

Here is what patients, advocates and clinicians had to say:

“ICER should adjust its approach to rely primarily on real-world evidence for evaluations. This would require ICER to time analyses differently, evaluating therapies at a point when sufficient real-world evidence exists.” – Institute for Patient Access

ICER reviews the cost effectiveness of new therapies before real-world data is available and sometimes even before the drug is given a price. For a more accurate analysis, IfPA argues, ICER should delay analysis until it has information on how the medication impacts patients in a real-world clinical setting. 

“A metric based on averages will never adequately reflect patient value, because there is no single perspective on how people see and value health.” – Partnership to Improve Patient Care 

QALYs, or quality adjusted life years, are a metric used by ICER to gauge medicines’ value – a highly controversial metric. Patient organizations such as the Partnership to Improve Patient Care find ICER’s use of QALYs troubling because “QALYs discriminate against patients and people with disabilities by placing a lower value on their lives and insufficiently accounting for outcomes that they value.” The QALY metric also ignores the diversity within the patient population of the same disease. 

“We strongly request that a disease-impacted patient or caregiver be allowed to serve as a member of the Voting Panel.” – The Headache & Migraine Policy Forum 

As the people who most need access to the medications ICER reviews, patients are arguably ICER’s most important stakeholder. Yet ICER’s reports often fail to meaningfully incorporate patient input.  

Groups like The Headache & Migraine Policy Forum want ICER to give patients and health care providers a seat on the organization’s voting panel, which weighs in on ICER’s reports at a public meeting.  The move would give patients a more measurable, meaningful role in ICER’s process.  

ICER should “gather and assess the impact of treatments on quality-of-life factors that patients with the disease think are most important.” – CancerCare 

From the patient’s perspective, the true impact of a treatment depends largely on quality-of-life improvement. If ICER wants to do right by patients, it must adapt its model to also include meaningful improvements in everyday factors such as quality of sleep, the ability to exercise, the ability to care for one’s family and the ability to be productive at work. 

As awareness of ICER’s flawed methods increases, it will take more than some carefully crafted retorts to fix what’s broken. Patient groups are demanding real, measurable, meaningful change. Will ICER deliver?

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