Anthem and Exondys 51 (Eteplirsen)

PPMD is deeply troubled to learn that health insurer Anthem will not be covering Exondys 51, stating the following position:

“The use of eteplirsen is considered investigational and not medically necessary for all indications, including but not limited to the treatment of Duchenne muscular dystrophy.”

This is not an investigational therapy. Exondys 51 is an approved drug. On September 19, 2016, Exondys 51 received accelerated approval. And while there are conditions to that approval, insurers should treat the drug as approved. To date, Anthem is the only insurer that has stated they will not cover Exondys 51 to our knowledge.

PPMD has reached out to Sarepta and will assist the company however we can to appeal this decision by Anthem.

Our community is still in the very early days of this drug approval – and we remain optimistic that Anthem will revise their decision following further review and discussion. We knew that the accelerated approval of the first therapy to treat Duchenne in the U.S. would be difficult. We knew that access wouldn’t be a slam dunk. And we know that achieving access and establishing pricing is a process that includes negotiations between Sarepta and health insurers. And our process has just begun. 

PPMD is tackling this issue head on so that every single person amenable to exon skipping 51 has access to this therapy.


We are hopeful that today's determination by Anthem will be updated and revised, upon further review. In the interim, be assured that Sarepta is committed to ensuring access to all US patients eligible to Exondys 51 and has created several mechanisms to provide financial support in the event that one's health insurance coverage doesn't completely cover the cost of therapy. For details about the options available view the recording of our webinar with Sarepta 
or contact SareptAssist directly at

Related links

Views: 1272


You need to be a member of PPMD Community to add comments!

Join PPMD Community

Need help using this community site? Visit Ning's Help Page.



© 2021   Created by PPMD.   Powered by

Badges  |  Report an Issue  |  Privacy Policy  |  Terms of Service