Harsh News Steals SMA Community Thunder

The U.S. Food and Drug Administration (FDA) approved Biogen’s SPINRAZA™ (nusinersen) under Priority Review for the treatment of spinal muscular atrophy (SMA) in pediatric and adult patients.

SPINRAZA is the first and only treatment approved in the U.S. for SMA, a leading genetic cause of death in infants and toddlers that is marked by progressive, debilitating muscle weakness.

With the approval of SPINRAZA, the future for those affected with SMA has changed, and the treatment has been made available for shipment in the U.S. to healthcare providers.

This should all be good great news, right?

Let’s think about great news like a job offer, a trophy, a great haircut, a promotion, a surprise visit with an old friend, or a great comeback to an offensive co-worker. Good things happen to us all the time, and when we share the news with others, those good things can feel even better.

When you get a great piece of news, who do you tell?

Do you get on the phone to your best friend?

Launch the news onto Facebook to sail the sea of likes?

So … along these lines, the SPINRAZA news should be and could be a reason to celebrate.

But, then there’s a glitch in the matrix—your insurance company may not cover the medicine.

It may be because the medicine is not on the insurance plan’s “formulary” or list of medicines covered by the plan. And considering the cost of SPINRAZA is set just short of $800,000/year—this news can be devastating.

Click here to read more on how some insurance companies are limiting the coverage of SPINRAZA to the SMA type 1 community.


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