By Terry Wilcox

In the debate over prescription drug prices, one group is being overlooked: people with rare diseases. The needs of these patients, who rely on specialty medications for their lives and livelihoods, must not be sacrificed in the quest to bring down drug costs.

Yet these patients are under attack in New York. Last month, New York’s Drug Utilization Review Board recommended that Medicaid pay less than one-third of the list price for Orkambi, a breakthrough cystic fibrosis drug that treats the underlying cause of the disease for the first time. This price control threatens access to Orkambi for New Yorkers on Medicaid. It also puts a chilling effect on research into new drug treatments, a consequence that will be amplified if other government and private insurers follow the review board’s lead.

The board’s recommendation is the brainchild of a group called the Institute for Clinical and Economic Review. Ostensibly an independent nonprofit working to lower drug prices, ICER’s board is filled with health insurance representatives who would like nothing more than to reduce the cost of covering specialty medications.

ICER bases its drug price recommendations on something called a “value framework.” This is a complex mathematical formula that is essentially a cost-benefit analysis of a particular drug’s effectiveness on extending lifespans. It is a cold, economic framework for determining the appropriate price of prescription drugs. It replaces the doctor-patient relationship with an Excel spreadsheet.

And the Empire State may just be the beginning. ICER wants state officials from across the country to follow suit.

A similar framework is used by the National Institute for Health in the United Kingdom to ration treatment based on average effectiveness. Former Major League Baseball pitcher Bob Tufts drives this point home. He explains how he was diagnosed with multiple myeloma in 2009, at a time when the condition was killing patients in one to three years. In the UK, his treatment protocol had not been approved because of cost concerns and the lack of evidence that it would extend his life. He says if that system were in place in the U.S., he likely wouldn’t be alive today.

In other words, value frameworks are similar to the “death panels” that for years have been laughed off as a conspiracy theory.

Value frameworks are a blunt tool. They do not take into account individual considerations about what makes life worth living. In the words of cystic fibrosis patient Dr. William Elder: The value of medication “cannot be adequately measured in lung function, life expectancy, or even quality of life … but on the meaning of my life. One pill twice a day has enabled me to answer the call to public service as a resident family physician.”

Adherence to value frameworks could usher in the treatment restriction known as “step therapy,” which limits access to treatments deemed “high-value” by insurers. Patients could access other drugs—including the newest therapies—only if the high-value treatment fails. This one-size-fits-all approach ignores the fact that different drugs work differently for different patients, and that goal of medicine is to match therapies, not rank them. Value frameworks give insurers justification to deny coverage of certain therapies, discouraging new ones from being developed. Football great Boomer Esiason, whose son Gunnar is one of 30,000 Americans with cystic fibrosis, a degenerative lung disease with no known cure, makes this point.

Eliminating the cost-drivers that are inflating the price of prescription drugs is a worthy goal. But no one is smart enough to set the right price, even with a complex Excel model. Value frameworks place a collectivist solution above individual patient needs. This is especially true for New York’s most vulnerable—those with rare diseases.

Terry Wilcox is the co-founder and executive director of Patients Rising, a patient advocacy organization.