Democratic presidential primary candidate Michael Bloomberg took flak again at Wednesday night's debate in Charleston over his past statements regarding women and minorities. But the other candidates once again ignored one of his most recent controversial positions. Earlier this month, a video emerged of Bloomberg arguing that some healthcare for the elderly should be restricted in order to prevent healthcare costs from bankrupting the country. He ends with the caveat, “Society’s not willing to do that yet.” 

Yet powerful groups are working to overturn this societal consensus that patients should be treated as individuals. Exhibit A is a nonprofit partially funded by the health insurance industry that’s working to limit access to breakthrough medications that would extend and improve their lives. Those with rare, life-threatening, or chronic diseases -- in addition to the elderly -- have the most to lose.

Last month, the Boston-based Institute for Clinical and Economic Review (ICER) released a draft report on three new medications for acute migraine, and another report on three new therapies for sickle-cell disease, which affect about four million and 100,000 Americans, respectively. The conclusion of both reports: The therapies' benefits in terms of longer lifespans or higher quality of life aren't worth their costs. ICER's opposition to these new prescription drugs follows similar conclusions it made on breakthrough therapies released last year to treat cystic fibrosis, Duchenne muscular dystrophy, and other devastating conditions.

Insurers, Medicaid, and Veteran's Health are using ICER's recommendations to deny access to medications under the guise of cutting the cost of health care. But there’s a problem: ICER’s recommendations for pricing and access are based on lifetime hypothetical, arbitrary, and generic constructs that lack scientific merit. 

ICER’s framework uses a measurement called Quality Adjusted Life Year (QALY) to determine the value of a particular treatment.  Put simply, one QALY equals one additional year of life lived at a hypothetical “perfect health,” two additional years of life lived at 50 percent of health, and so on. The QALY inherently discriminates against patients with disabilities, rare diseases, and complex and chronic conditions, because they will never live a year in “perfect health.”  So according to ICER, additional years of life for millions of Americans -- including paraplegics, diabetics, schizophrenics, and even the elderly -- are simply worth less.  

It’s no wonder the National Council on Disability recently issued a report opposing QALY measurements because they "place a lower value on treatments which extend the lives of people with chronic illnesses and disabilities.”  

In determining a treatment’s “value,” ICER sets an arbitrary price limit of $150,000 per QALY as its maximum threshold; new therapies priced higher are deemed as not cost-effective.  This means that a medication that extends a lifespan by two QALYs and is taken by a patient for 30 years must cost less than $10,000 per year to receive ICER's “cost-effectiveness” approval.

What’s missing from this equation?  This framework does not capture the full costs and benefits of treatments. It does not recognize that different patients will have different quality of life improvements and lifespan extensions from the same drug. Rather than attempting to discover new facts about the impact of therapies on patient populations, ICER’s value assessment framework ignores individual patient needs and preferences. It should be put to the side in favor of a meaningful scientific program to support health care delivery and improve the lives of patients, caregivers, and their families.

Despite its drawbacks, QALY is an effective tool to help health insurers deny coverage. No wonder Blue Shield of California Foundation seeded ICER with nearly half a million dollars.  Yet ICER also receives funding from the pharmaceutical manufacturers whose products they are trying to limit. By paying to have a seat at the ICER table, drug makers are legitimizing a body that contributes to patient discrimination.

There's a bipartisan consensus that health care costs must be reduced, for good reason. Rising health care costs are one of the primary threats facing patients with rare and chronic diseases. But in the rush to reduce costs, these patients must be protected from those looking to standardize and ration their needs. Every American, especially those in “imperfect” health, should have access to the best treatments available. No matter what Mayor Bloomberg or ICER believe

Paul Langley, Ph.D is the lead health economist for the Institute for Patient Access and Affordability, a program of Patients Rising.