Express Scripts CEO To Kids With Cystic Fibrosis: Find Another Way To Stay Alive

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  • 05/12/2015
Though medicines for cystic fibrosis are life saving,  insurers and pharmacy benefit managers force people with the disease to pay thousands of dollars out of pocket for them.  No new medicine has been approved for CF in nearly a decade.  Two years ago, one medicine called Kalydeco was approved.  It helps people with a specific genetic mutation causing their disease have been approved.  They are the only hope for the 2000 or so people with that mutation. 

Insurance companies and PBMs have responded by denying use of the drug altogether or forcing people to fail on other therapies or not covering the drug at all. 


The FDA is on the very of approving another medicine called Orkambi, which targets another rare mutation that causes CF patients to choke to death as their lungs fill up with mucus.   It will likely benefit another 4000 people.   And it will cost about $250K per patient per year.

This medical apartheid is justified by Steve Miller CEO of Express Scripts -- the biggest PBM in the US -- "we hope the product comes out at a more affordable price, because the burden to payers is extraordinary."

Except that it isn't.   The total market for CF drugs in the US is about $1.6 billion.  That's less than .001 percent of total health care spending.

Meanwhile Orkambi reduces pulmonary exacerbations.. which sounds nicer than it is.  They are described as a " period when lung disease worsens. This can include an infection, an increase in cough and sputum, a drop in lung function and weight loss. "

Exacerbations are linked to a higher risk of premature death, hospitalizations, and massive use of other medicines..all of which Orkambi would presumable prevent.  And the cost of an exacerbation can run into the hundreds of thousands.  That doesn't include the cost of lost productivity and reduced quality of life. 

So which is the bigger burden to payers and patients? 

But it appears that the PBMs and insurers don't care.  They will make Orkambi more expensive or  unavailable.

Such practices have been singled out as violating the civil rights of patients. As the Department of Health & Human Services has stated: “placing most or all drugs that treat a specific condition on the highest cost tiers discourages enrollment by individuals based on age or based on health conditions, in effect (is) making those plan designs discriminatory.”

Yet, insurers and PBMs have actually increased their redlining of the sick:  The number of plans engaging in discrimination has nearly doubled since 2012.  And this year they are charging 30 percent more for breakthrough medicines than they did in 2014.   PBMs are also increasing the number of medicines they won’t pay for at all by 35 percent.   Moreover, insurers are paying doctors bonuses to use cheaper drugs and not paying for medicines tailored to the specific ‘personality’ of their disease.

Center for Medicine in the Public Interest is a nonprofit, non-partisan organization promoting innovative solutions that advance medical progress, reduce health disparities, extend life and make health care more affordable, preventive and patient-centered. CMPI also provides the public, policymakers and the media a reliable source of independent scientific analysis on issues ranging from personalized medicine, food and drug safety, health care reform and comparative effectiveness.

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