You’ve probably never heard of it, but the Institute for Clinical and Economic Review is one of the most powerful players in healthcare. It works with insurance companies to evaluate healthcare using a math formula.  By reducing every patient to a dollar amount, a QALY model determines which patients get covered – and who is left without treatment. ICER’s methodology is fundamentally flawed because it starts with the QALY.  Here are five ways that the QALY methodology, short for quality-adjusted life year, hurts patients.

QALY Devalues the Lives of Cancer Patients and Survivors

Cancer patients and survivors are disadvantaged anytime QALYs are used because they can never achieve full worth. Quality-adjusted life years assume a greater value for individuals with a higher baseline health status. 

“In the most basic terms: if you get sick, you become a fraction, and your time no longer has the same value as a fully healthy person’s time,” points out cancer survivor Jennifer Hinkel, a health economist who advocates on behalf of patients. “In some QALY-based evaluations, a person never recovers full value for their time, even if she or he survives the disease.”

Hinkel cites the example of ICER’s calculation of patients with multiple myeloma, whose lives are valued at three-fifths the value of a healthy person. No matter what they do. By its very definition, QALY devalues the lives of cancer patients and survivors.

Congress Banned Medicare From Using QALYs To Protect Seniors

There’s a reason why ICER – as a private and unregulated agency – is the leading proponent for using quality-adjusted life years. Medicare, the country’s biggest health care program, is barred by law from using the metric.

As part of the Affordable Care Act, Congress banned Medicare from using the QALY methodology out of concern that it could hurt the ability for the elderly and people with disabilities to access to medical care.

Because ICER is a private organization, it’s not bound by federal laws restricting the use of QALYs.

QALY Makes It Harder for Patients with Chronic Conditions to Access Care

For patients living with chronic conditions and diseases, it’s absolutely critical to get the right treatment – right away. ICER’s QALY-based recommendations can result in insurance treatment denials, barriers to access, and long delays in accessing the medicine prescribed by their doctor. That’s because insurance companies routinely use ICER reports to force patients with chronic diseases or fatal conditions to “fail first” before receiving access to more expensive treatments.

Any delay can result in worsening symptoms, undermine a patient’s ability to work, and cause an irreversible progression of their disease.

QALYs Discriminate Against People with Disabilities from EVER Receiving Equal Treatment

People with disabilities can never receive full value under ICER’s framework.

 “Because people with disabilities, seniors, and patients with chronic conditions may experience a potential for health that is less than their ‘healthier’ counterparts,” argues former Congressman Tony Coelho, “treatment that extends or improves their lives may result in fewer QALYs than a treatment developed for a non-disabled or younger population where the treatment is able to return the patient to so-called perfect health.”

Valuing the life of a person with a disability differently than a healthy person is simply discriminatory and morally reprehensible. 

“Discrimination is not the gold standard,” a coalition of 38 patient and disability groups warns. “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.”

ICER’s Methodology Stifles Innovation for Patients Living with Rare Diseases

More than 30 million Americans live with a rare disease. Collectively, there are more patients living with a rare disease than patients with HIV, heart disease, or stroke – combined.

Diseases are classified as rare when they affect fewer than 200,000 patients. That can make it hard to diagnose and even harder to find a treatment. As a metric, QALY stifles research into cures for rare diseases because such treatments are unlikely to ever restore “perfect health” for these patients.

“The quality-adjusted life year methodology is particularly ill-suited to assess the value of rare disease drugs,” notes Dr. William S. Smith, a Visiting Fellow in the Life Sciences at the Pioneer Institute in Boston. “New therapies for rare diseases are, for obvious reasons, approved with fewer subjects in clinical trials and predicting the longevity of patients in these trials is difficult.”