Just curious - has anyone in the PPMD community received insurance approval for Emflaza (deflazacort) in the US?  We're currently working through the process, but no surprise, the insurance company has already announced a blanket rejection of the drug, given the insane pricing.

I hope that PPMD is speaking directly with the executives at PTC to stop this unethical price gouging.

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United Healthcare has been reviewing my sons app for a month, no response. Ive little hope they will approve.
6 else later, still no response from insurance. Anyone else any luck?
*6 weeks ago

We have made it through the approval process but I'm still furious about this whole situation.  While we are now receiving Emflaza, my insurance company (and indirectly my employer) is paying THOUSANDS PER MONTH!  Adding insult to injury, the 'new' drug is still being manufactured in Spain, probably in the exact same factory!

I also find the company name (EmflazaCares) insulting.  The only thing they care about is their profits.

Really disappointed in PPMD.  They fought hard against Marathon's pricing structure but have been silent when PTC did nearly the exact same thing.  Could this be due to PTC's development of other DMD drugs? 

Thank you PTC (and PPMD) for helping to raise the cost of prescriptions for all Americans and continue the collapse of the American healthcare system.  I strongly support efforts to find cures/treatments for DMD, but not this way...

I assume US Bio Pharmacy is leading the process to get your insurance company to approve the drug, correct?  Our request got denied 2-3 times but then finally got a review board to approve.  All handled by US Bio Pharmacy, coordinated through EmflazaCares.

Hope this helps.

My son was approved right away by Medicare. We used to pay less than $200 for a 90 day supply of Deflazacort we purchased from Masters Pharmaceuticals in the UK. Now...we personally pay $0/month for Emflaza...but my son's Medicare Rx insurance pays about $6,600/month!!! Unbelievable. It just makes my stomach turn.

Glad to hear you are able to continue receiving the drug!

Still puzzled by PPMD's defeaning silence on this issue.  This is the EXACT problem with health insurance (not healthcare) in the US.  This unethical behavior by drug and insurance companies (and government meddling) will continue to destroy arguably the best healthcare system in the world. 

Compare the difference - without any involvement from insurance companies or government, we could buy deflaz in the open market for less than $80/mo, including international shipping.  Now that we have greedy and unethical drug/insurance/government theives involved, the costs have skyrocketed by 10 times!

I desperately want to find a treatment/cure for DMD, but not at the cost of the healthcare of all Americans.  If we keep going in this direction, when the cure is found, no one will be able to afford it... :(

I have two sons with DMD.We have applied for Emflaza and denied from insurance .We will claim for the approval but the thing is I am up set is that it clearly stated in the denial letter to use alternative PREDNISONE( that has more side effects then Defllazacort).Top of it ,it should be parents decision when given choices of prednisone or deflazacort.Would not it be better if we still getting it from international market ,Masters or some other pharmacies then begging for EMFLAZA to  all these Selfish Drug or pharmaceutical companies.And I have no hope from them at all ,when the cure will be here these people will raise that cost to God know what level.Very disappoining. Can we parents raise this question to any platform?

We have been receiving Emflaza through the bridge program for free for 5 months now.  First, Emflaza Cares was handling it, now I am speaking directly with US Bioservices.  Bioservices is having a difficult time getting our insurance to recognize the drug at all.

My main concern at this point is that my son is now showing side effects he did not have before the switch to Emflaza.  He has put on almost 10 pounds in the last 5 months and now has the "moon face".  He has been on deflazacort for 3 years.  Why are we just now seeing these side effects?  Is it a coincidence that they began when we were forced to switch to Emflaza?  I mentioned this in our last MD clinic in October, but was not given a meaningful response.  

Are your children showing any new side effects since the switch?  

We haven't seen any additional side effects from Emflaza.  Unfortunately, my son (13 now) has been battling weigh gain and "moon face" for some time now, well before the switch.  We didn't really start to notice it until he was maybe 8, but looking back a photos, it continues to progress.  We try to control calories and sodium intake, but it's really hard and as you know, our boys have enough hard things to deal with...

Hope this helps!



KarstensMom said:

We have been receiving Emflaza through the bridge program for free for 5 months now.  First, Emflaza Cares was handling it, now I am speaking directly with US Bioservices.  Bioservices is having a difficult time getting our insurance to recognize the drug at all.

My main concern at this point is that my son is now showing side effects he did not have before the switch to Emflaza.  He has put on almost 10 pounds in the last 5 months and now has the "moon face".  He has been on deflazacort for 3 years.  Why are we just now seeing these side effects?  Is it a coincidence that they began when we were forced to switch to Emflaza?  I mentioned this in our last MD clinic in October, but was not given a meaningful response.  

Are your children showing any new side effects since the switch?  

Thank you for your reply.  I too have been careful with his diet, but I need to get a bit more educated on what foods are contributing to the problem.   Thanks again and I hope you are all having a great holiday!  Happy New Year 

Has anyone seen the prices come down since PTC took over?  We are now going through the approval process with our insurance.  Once it is approved I'm told our maximum out of pocket will be $500 (per our insurance prescription plan).  However, I still cannot get a straight answer regarding the actual price.  

Actually, quite the opposite!  Last year, PTC was charging my insurance company a ridiculous $6800/MONTH for Emflaza.  As of 2018, the monthly cost has RISEN to almost $7400!  

What I've learned is that PTC will cover any cost that isn't covered by your insurance, so you shouldn't pay anything out of pocket. 

Before you feel bad for PTC, the insurance company is still paying them a FORTUNE!  Ultimately, this corruption drives up the cost of insurance for everyone and lines the pockets of the PTC executives.  Hope they enjoy their yachts while fleecing all of the DMD families and breaking our healthcare system.  I've send many messages to my state and federal legislators, but they're probably in on the scam.

I miss the $60/mo cost of deflazacort from Masters UK without ANY assistance from insurance or government involvement.  Nothing short of robbery!  

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