The sisters began taking Syprine in 1987. Their symptoms went away, and they both went on to highly successful careers, N as a public-relations executive and K in the wealth-management division of a major investment firm. Their insurance covered the cost of the drug, which wasn’t much because Syprine is simple to make. The sisters were vaguely aware that, in the latter part of the aughts, their co-pays, originally next to nothing, had started to climb, but health insurance still insulated them from the realities of drug pricing.
That is, until it didn’t, in 2014, when N went to her local Walgreens to pick up her lifesaving supply of Syprine—and found that her insurance company had denied coverage on the grounds that the drug was too expensive. Shocked, she asked the pharmacist the cost. She remembers him saying it had risen to around $20,000 for a month’s supply. She eventually managed to get coverage—after all, treating her for liver failure would have been more expensive—but the co-pays have continued to climb. She and K now pay $500 and $400, respectively, for a three-month supply.
Syprine, which can be had for $1 a pill in some countries, now has a list price of around $300,000 for a year’s supply in the United States; Cuprimine has seen a similar price increase. There is no generic version of either, in part because of a huge backlog for new drug approvals at the F.D.A.
Both sisters have done well financially, but their health insurance in retirement is uncertain, and they are terrified about the consequences if their co-pays eventually get calculated as a percentage of a drug’s total cost, the likelihood of which is “1,000 percent,” according to Art Caplan, the head of the medical-ethics division at New York University. “I have advantages, but I can’t fix this,” says K. “You are at the mercy of this abhorrent system.”