Since its inception, the Institute for Clinical and Economic Review has faced relentless criticism for its discriminatory health care assessments. Now, the organization is embarking on a review of its own process.

Politico reports that “a coalition of 38 patient and disability groups pressed the Institute for Clinical Economic Review this week to change its cost-effectiveness analyses.” Led by the Partnership to Improve Patient Care, the coalition of patient groups includes the American Association of People with Disabilities, CancerCare, Lupus and Allied Diseases Association, Inc., and the National Alliance on Mental Illness.

Patient advocates have long criticized the cost appraiser, known as ICER, for boosting the profits of pharmacy benefit managers and insurance companies by blocking patient access to lifesaving treatments. The rare disease community, in particular, says that ICER’s decisions routinely rely on incomplete data and discriminate against patients with rare diseases.

“Attempting precise calculations with incomplete data isn’t just poor practice.  It’s bad for patients, for whom medicine’s value is often personal, contextualized and deeply felt,” the Institute for Patient Access explains its analysis of ICER’s flawed methodology. “If ICER wants to improve its framework, it can start by taking a closer look at what matters to patients.”

Is ICER serious about reforming its broken and discriminatory process? If ICER wants to show it’s serious about fixing its broken value framework, it can start by ditching the QALY.

QALY: How Insurance Companies Determine the Value of Your Life 

QALY, short for quality-adjusted life year, is a complicated and controversial method used by insurance companies and pharmacy benefit managers to calculate the value of a patient’s life. One QALY is equal to one additional year of life in perfect health or two additional years of life at 50 percent health and so on.


“QALY is a generic measure of disease burden, including both the quality and the quantity of life lived,” explains Dr. Rafael Fonseca, who publishes the Patients First blog. “It is used in economic evaluation to assess the value for money of medical interventions.”

By reducing a patient to dollars and cents, the QALY model attempts to determine the extent to which a given medical treatment extends and improves lifespans. In other words, it determines whether a patient is worth covering after a certain price threshold.

“The ethical problems associated with QALY are compounded when you consider that some patients will never achieve perfect health,” says Terry Wilcox, co-founder and executive director at Patients Rising. “Are the lives of people confined to wheelchairs less valuable under the QALY framework because they will never walk?”

Advocates for patients living with chronic conditions, such as migraine, are also deeply troubled by ICER’s use of QALYs to evaluate treatments.

“QALYs also result in lower ICER valuations for regenerative or life-enhancing therapies,” says the Headache & Migraine Policy Forum.

“Discrimination is not the gold standard”

Despite the inherent problems with the QALY metric, ICER has embraced the QALY in its value assessments, calling it the “gold standard” of medical cost appraisals.

“The Quality-Adjusted Life Year (QALY) is the gold standard for measuring how well a medical treatment improves and lengthens patients’ lives,” the group wrote in a December 2018 promotional material.

Patients groups offer a sharp rebuttal to ICER’s endorsement of the QALY metric.

“Discrimination is not the gold standard,” the patient coalition wrote. “We join the chorus of stakeholders that have implored ICER to move beyond QALYs and urge ICER to instead follow the lead of other organizations that are advancing truly innovative value assessment models that are open-source, transparent, and able to generate disease-specific information using methods such as multi-criteria decision analysis.”

By speaking up, patient advocates have forced ICER to admit its process is flawed and in need of reform. ICER can show the patient commitment it’s truly committed to honest reform by ditching the QALY altogether.