Don’t put a price cap on people’s lives

We should resist dangerous effort to limit health care coverage

WHEN A PERSON is first diagnosed with epilepsy their world is turned upside down.  The questions come fast and furious. What does this mean for my life? Will I die from this? Can I pass this along to my children? Why me? Can this disease be managed, and will I still be able to participate in life and all that is important to me?

The answer to that last question is critical because everything suddenly seems very elusive. It can truly be frightening.

The reality is that, yes, nowadays the majority of people with epilepsy can live their lives with some amount of normalcy, thanks to innovative medical therapies that are on the market and others that are in development. But, as with many diseases that are rare or chronic conditions like MS, cancer, and cystic fibrosis, the specialty medicines needed to control—or hopefully someday cure—them can be expensive. It takes years, sometimes decades, of research and clinical trials (many which fail) to bring a successful drug to the market, and hope to millions of people.

Hope. That’s what these patients live for.

But that hope will be dashed if a Boston-based organization called the Institute for Clinical and Economic Review (ICER) is successful in influencing state governments to use something it promotes, called a value framework, to determine how much medical care and coverage a patient is worth and exactly how much a health insurer should be responsible for.

ICER is a non-profit entity made up of people with ties to several large insurance companies. Its supposed goal is to reduce health care costs. But at what cost? This unaccountable group of people uses a complex math formula that places a value on how much your life is worth based on your age and your disease, called a “quality-adjusted life year,” or QALY. It then caps the amount of care the insurance company should pay for.

If that sounds callous, it is. It’s nothing short of rationing care for those who are most vulnerable.

This group has no idea about an individual’s particular situation. They don’t know how a patient reacts to a certain medication or why the doctor specifically prescribed it. They have no idea of the patient’s lifestyle. Do they exercise regularly? What does their diet consist of? Are they allergic to certain ingredients found in some medicines?

Every patient is different and to say that all people that fall into certain age and disease groups should be treated as one is ridiculous, at best, and dangerous at worst.

Yet ICER’s value framework recommendation is gaining traction. New York just established spending caps for cystic fibrosis patients on Medicaid. And CVS Health has announced it will offer an insurance plan that caps the amount of care for which certain patients will be eligible.

Congress prohibited Medicare from using QALY thresholds for coverage 10 years ago; it seems counterintuitive to revisit this at a time when new treatments and cures are on the brink.

Meet the Author
No one asks to be hit with these disease afflictions. Patients are trying to live with them and work as best they can. If someone can manage a disease through medical therapy and, in doing so, is able to contribute to their communities and live longer with their families, does that simply not count? If these therapies mean they can avoid hospitalizations, which increase health care costs, does that not count?

The value framework ICER uses is punitive to those who have done nothing wrong. They apparently just got the wrong illness to be considered valuable enough to treat completely.

 Susan Linn is president and CEO of the Epilepsy Foundation New England.