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Rare diseases, however, aren’t all that rare. There are an estimated 7,000 of them, and about 30 million Americans have one — roughly the same number of people in the United States with diabetes. And although there are no treatments for most rare diseases, new therapies are coming on the market nearly every month, with some reaching beyond $2 million a year for a single treatment. Of 59 new drugs approved in 2018, more than half, or 34, were for rare diseases. Those treatments are typically the most expensive, helping to drive an increase in overall spending on prescriptions nationwide.
As more and more families are beseeching drug companies and insurers to pay for this novel class of treatments, both big and small employers are getting hit with higher drug bills. It may be for a worker’s child with hemophilia whose treatments can cost over $1 million or for an employee receiving immunotherapy for lung cancer. But not every union or corporate employer has an adequate cushion to absorb these prescription bills.
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