‘The Sovaldi of rare diseases’ on the market for children

For the two years I’ve been writing this blog, I’ve stuck to stories specifically about hepatitis C. Some were critiques of the high prices charged for hep C drugs.Today I’ve learned that the $100,000 or so required to rid patients of the liver killing disease has been topped by far by a drug that can save children’s lives—if their parents can afford millions of dollars for treatment.So I’m writing about a new (not for hepatitis) drug, Spinraza.

The drug maker Biogen has just gained U.S. approval for Spinraza. Injected directly into the spine, Spinraza can halt or even reverse spinal muscular atrophy. SMA afflicts babies and children. They progressively lose muscle control and die, usually before age 20 and often as toddlers or infants. SMA is the leading cause of death in infants. Spinraza costs $750,000 U.S. per year for the first year of treatment, and $375,000 per year after that.

Biogen, like the companies that developed drugs for hepatitis C, can be applauded for its research on the breakthrough SMA drug. But like hep C drug makers, Biogen is charging far too much.

Interestingly, healthcare analyst Geoffrey Porges, called Spinraza “the Sovaldi of rare disease drugs” Porges is an analyst for Leerink, a healthcare investment bank. He made the statement to the biotech publication Endpoints News. Gilead’s Sovaldi set the pace in drug pricing in its 2014 rollout of Solvaldi. The hep C treatment cost patients $84,000 for eight weeks of pills that were combined with interferon or simeprevir. Although the cost of Solvaldi and other hep C drugs has decreased somewhat in the past two years, many, many patients still cannot afford treatment.

Now there’s a much costlier drug that can keep helpless children from dying. One can imagine the dollar signs in the eyes of Biogen shareholders—and the tears in the eyes of parents who cannot afford the drug.

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