New Price for Muscular Dystrophy Drug Draws Criticism | NBC Southern California
National & International News
The day’s top national and international news

New Price for Muscular Dystrophy Drug Draws Criticism

In the spotlight is a steroid called deflazacort

    processing...

    NEWSLETTERS

    New Price for Muscular Dystrophy Drug Draws Criticism
    NBC 5 News

    Christine McSherry is used to a fight. Her son, Jett, was diagnosed with Duchenne muscular dystrophy, a rare, debilitating condition, when he was 5. He lost the ability to walk just before he turned 14.

    McSherry has become an outspoken advocate for Jett and other kids with Duchenne, particularly in fighting for access to drugs she's convinced help against the disease's devastating effects, CNBC reported.

    Jett, now 21, has been taking a steroid called deflazacort since he was 8. Deflazacort wasn't approved in the U.S., so McSherry and a number of other families of kids with Duchenne imported the drug from overseas. She says it cost about $1,200 a year out of pocket.

    On Monday, deflazacort got a new price tag: $35,000 a year for a patient in the U.S. weighing 25 kilograms, or about 55 pounds.

    Sanders Vs. Reporters Over Latest Fake News Tirade

    [NATL] Sanders Argues With Reporters Over Latest Fake News Tirade

    White House deputy press secretary Sarah Huckabee Sanders displayed the administrations's antagonism against the media in heated exchanges with members of the White House press corp during the daily press briefing on Tuesday, June 27, 2017. Sanders pointed to a retracted CNN story as basis of the White House's "frustration" and skepticism with ongoing coverage, while one reporter accused the White House of "inflammatory rhetoric."

    (Published 5 hours ago)

    PTC Therapeutics, which set the price, says it "represents sustainable pricing which balances providing access to eligible patients in the United States…while maintaining sufficient infrastructure and programs including continued investment in Duchenne."