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Gaucher’s syndrome is a rare disorder that afflicts fewer than 10,000 people in the United States. Kristina Caffrey is one of them. Its symptoms include an enlarged spleen, excessive bruising and bleeding, and weak bones. It is caused by an enzyme deficiency.
Caffrey was diagnosed at age three. The treatments for her disease have gone through several iterations over the years – all of which are expensive. The newest, called Cerdelga, is a pill that costs $310,000 annually. Luckily, Caffrey is an attorney and has good health insurance through her law firm. She can afford the monthly $150 copay.
But fear of the drug’s outsized cost dogs her. “If I lost insurance, there would be absolutely no way I could pay,” she says. “Even if I had a lapse in insurance there is no way I could just cover a month of meds.”
The Albuquerque, N.M., resident isn’t sure she will have children. “Can I responsibly have kids when I have this very expensive drug I need to stay on?”
Read the rest of Tarbell’s series on Big Pharma and high drug costs.