PPMD Community

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?

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