Aug 21, 2019
Patients Rising NOW offers the following comments on ICER’s May 22nd draft report, “Deflazacort, Eteplirsen, and Golodirsen for Duchenne Muscular Dystrophy.” Our comments about the draft report are organized below into sections concerning: Patient and Family...
Aug 12, 2019
Their kids have a rare and fatal disease. This unelected, unaccountable industry insider just told a group of Duchenne moms: “That’s why we don’t have you vote.” Dr. Steve Pearson just might be the most powerful insider in health insurance. He’s the president of...
Jul 25, 2019
ICER. What is it? Who is it? Who put them in charge of my children’s health care? I ask this question – urgently – because Thursday, this group called ICER is meeting in Massachusetts to decide whether my sons, Austin and Max, should continue to have access to new...
May 27, 2019
More than 13,000 boys living with a rare and fatal type of muscular dystrophy could be denied access to the only available medical treatments, based on the preliminary findings of an insurance-backed cost appraiser. The Institute for Clinical and Economic Review, a...
