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Across the country, similar stories are playing out as private insurers and already-squeezed state Medicaid programs wrestle with what, if any, limits to place on patients’ access to break-the-bank drugs, weighing the needs of the ill against budget realities.

At the same time, policymakers and physicians increasingly demand to understand why drug manufacturers affix price tags that have risen to once unimaginable levels.

“It looks like a drug that works for a tragic condition that afflicts children and cripples and kills them. That’s the good news,” Jerry Avorn, a professor at Harvard Medical School, said of Spinraza. But “how in the world did the price of $750,000 a year get chosen?”

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