The Powerful Private Organization Putting a Price on Life — Again and Again

By Sue Peschin

For the millions of families living with Alzheimer's disease, new therapies offer a glimpse of hope in an otherwise heartbreaking disease process.

But over and over again, a non-governmental organization -- which markets itself as the arbiter of which medical treatments are worth insurance coverage -- has erected barriers between patients and potentially life-changing medicines.

The organization, the Institute for Clinical and Economic Review (ICER), issues value assessments on new, FDA-approved therapies, usually for conditions where patients either have no treatment options or have run out of them.

One of many obstacles that patients and the groups that advocate on their behalf must overcome in their fight to secure coverage for new medications are ICER's duplicative, burdensome "requests for public comment."

Patients and advocacy groups like mine can't simply ignore these requests, since ICER's reports influence whether health insurance providers, both public and private, make medicines available to patients. Even the Department of Veterans Affairs and state Medicaid agencies rely on ICER assessments.

If we don't respond, the patients we represent run a real risk of losing access to medicines, especially since ICER's methodology -- and its recommendations -- undervalue treatments for populations that have fewer expected years of life left or shorter average life spans than the overall population.

Consider how ICER's reports rely on a metric known as a Quality-Adjusted Life Year (QALY).

In a QALY analysis, a year of so-called "perfect" health is more valuable than a year in which a person experiences health problems. By the same reasoning, a drug that returns a patient to that supposedly perfect state is considered more cost-effective than an identically priced one that merely prolongs life or alleviates symptoms.

The fundamental problem with this rating tool is that it discriminates against any group of people who are sicker or older than the general population. That includes people with disabilities, as well as groups who experience poorer health because they face inequities in access to care.

A recent ICER request for comment concerned lecanemab, a new treatment for Alzheimer's disease that was approved under accelerated approval by the FDA in early January.

The older age demographic and large number of people impacted provides plenty of fodder for ICER's QALY-based assessment to assign Alzheimer's treatments a lower cost-effectiveness.

This kind of cold valuation of whose life is worth living can play out terribly for people who face long-term health challenges as they age.

Yet, the private health insurance companies that cover tens of millions of Americans are relying on ICER, which uses QALY-based methodology, to help them decide whether to cover new FDA-approved treatments for cancer, rare diseases, Alzheimer's and other life-threatening conditions.

No one elected ICER or appointed it to a government role -- at least not yet. Payers have simply handed them the power to make life-or-death decisions. The Inflation Reduction Act allows Medicare to set prices for prescription drugs starting in 2026, and left the door wide open to how it will be operationalized. ICER is at the front of the line, standing by -- and that should concern all of us.

Sue Peschin is the president and CEO of the Alliance for Aging Research.

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