How Drug-Company ‘Benevolence’ Silences the Sick


For decades, the price of Syprine was $1 per 250-milligram tablet, or about $1,460 a year………. Today, Valeant charges around $300,000 for a year’s worth of Syprine…………

How Drug-Company ‘Benevolence’ Silences the Sick


Why don’t advocacy groups say more about drug costs?

(Bloomberg View) — Among the drugs that helped bring Valeant Pharmaceuticals International low, none did more damage to its reputation and stock price than Syprine. Syprine is a drug that treats a rare illness called Wilson disease, which prevents the body from metabolizing copper and can lead to liver failure and death if left untreated.

(Related: Gilead-backed advocates pressuring states to cover pricey pills)

For decades, the price of Syprine was $1 per 250-milligram tablet, according to a recent article in the medical journal Hepatology. For most people, a maintenance dose requires four pills a day, bringing the price during that era to $1,460 a year.

PhRMA says developing innovative medications is expensive.

With only 3,000 diagnosed cases of Wilson disease in the U.S., the drug was hardly worth the trouble for its longtime manufacturer, the giant pharmaceutical company Merck & Co. So in 2006, Merck sold Syprine, along with another Wilson-disease treatment, Cuprimine, to the much smaller Aton company, which began hiking the price. By the time Valeant bought Aton four years later, Syprine had risen fivefold, to $7,824 a year, according to the Senate Special Committee on Aging.

To the delight of Wall Street, Valeant had built its business by buying companies with drugs that were the gold standard for a particular disease, and then raising prices relentlessly. Today, Valeant charges around $300,000 for a year’s worth of Syprine. The company’s most recent annual report shows that the division that houses Syprine and many other controversial drugs generated $1.5 billion in profit in 2016, on 1.9 billion in revenue. That is a margin of 79%.

In the fall of 2015, however, the Valeant bubble burst and the company came under intense scrutiny for its pricing strategy. Syprine was Exhibit A. When that Senate aging panel conducted a hard-hitting investigation into prescription drug prices, Syprine and Cuprimine were two of the four Valeant drugs included in the committee’s examination.

And when my former colleague Bethany McLean wrote an account of Valeant’s financial meltdown for Vanity Fair, she led with the story of a man she called J. He had become obsessed with Valeant’s pricing practices after one of his relatives went to refill a Syprine prescription, only to be told that her insurance company would no longer cover it, and that she would have to pay $20,000 for a month’s supply. (The insurer eventually relented, but her co-pays are now $500.)

J is John Brennan, a lacrosse coach in suburban Chicago. He agreed to shed his anonymity because there is another story about Syprine and Valeant that he wanted to get into the public realm. It’s about the relationship between the company and the Wilson Disease Association, the advocacy group working on behalf of patients. Just about every serious disease has at least one nonprofit devoted to curing the illness or helping patients. Yet with all the furor over skyrocketing drug prices, virtually all these groups have been curiously silent. The story Brennan brought me may help explain why.

Last May, after Valeant’s share price had dropped from $260 to $32 in nine months, the board fired its chief executive, Michael Pearson, the man who had devised the price-hike strategy.

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