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. Over the last two years, 2 therapies that help people with a specific genetic mutation causing their disease have been approved. They are the only hope for 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 verge 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.
It's time to end discrimination against people with rare or life threatening diseases.