Marathon Pausing Launch of their $89,0000 Duchenne Drug

James Radke

Looks like the CEO of Marathon got some hate mail this weekend from many people, including Senators Bernie Sanders and Elijah Cummings

$ESRX on Marathon's Emflaza: "This is another example of egregious pricing for an old drug that is available elsewhere for much less."

— Meg Tirrell (@megtirrell) February 13, 2017

.@RepCummings @SenSanders: #Emflaza price outrageous; Marathon abusing US orphan drug program#biotech #pharma #drugpricing #drugprices

— Donna Young (@DonnaYoungDC) February 13, 2017

As we reported last week, Marathon’s newly approved corticosteroid Emflaza (deflazacort) was going to cost $89,000 a year for patients with Duchenne muscular dystrophy. Given that families could purchase the drug overseas for a fraction of that price, the CEO, Jeffrey Aronin issued a statement that they are pausing the launch of the drug (even though a launch date had never been set).
More specifically, the CEO stated:
  1. We are pausing our launch which has not taken place yet. We have not sold any new product, and we will pause that process
  2. We will maintain our Expanded Access Program, through which 800 patients currently receive Emflaza free of charge. If new patients seek to be included in our EAP, we will make that possible for free.
  3. People currently receiving deflazacort from other sources will continue to have that option
  4. We will meet with caregivers and explain our commercialization plans, review their concerns, discuss all options, and move forward with commercialization based on an agreed plan of action
The communication went on to note that “Please know we sought FDA approval of Emflaza to improve access to this treatment. We have and always will support you in that endeavor. We hope this brings clarity and comfort to you and reassures you that your 

About Duchenne Muscular Dystrophy

Duchenne muscular dystrophy is a progressive muscle disorder caused by the lack of functional dystrophin protein. Patients with Duchenne muscular dystrophy lose the ability to walk as early as age 10 and experience life-threatening lung and heart complications in their late teens and twenties.
Corticosteroids are a staple for boys with Duchenne and until the approval of deflazacort, families would you use off label corticosteroids or buy deflazacort from overseas pharmacies.  And until the approval of deflazacort, the price for it overseas was much lower ($1600 per year).
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