Posts Tagged ‘Multiple Sclerosis’

FedEx delivered the tecfidera today… the starter pack… four intriguing boxes… four small bottles… one for the 120mg bid dose for 7 days… the other three for the 240mg bid maintenance dose… 7 day doses with 14 pills in each bottle… plan to start saturday morning… plan to take pills after breakfast and dinner to minimize possible gastro side effects… and plan to take a 325mg aspirin a half hour before to minimize possible flushing side effects… doing all this with no expectations… but will continue to blog my progress and my tecfidera musings… the good… the bad… the ugly… about this new $55,000 a year pill for multiple sclerosis… stay tuned…

Made a call to US BioServices (877-654-7810) first thing today… got though right away… no waiting… spoke to another very nice representative who, after asking me my height and weight and drug allergies, told me that they would be sending tecfidera at no cost to me through end of year… they said it would ship fedex from texas today and should arrive in two days… another totally amazing unexpected outcome…

After waiting patiently for ten days, missed a call from US BioServices (855-755-9413) early this Saturday morning… the three day Memorial Day holiday weekend… they left a very short message to call back on Tuesday… could not believe they called on a holiday weekend and that my iPhone was upstairs while eating breakfast downstairs… guess this just adds another three days to my tecfidera journey… stay tuned…

After waiting ten days with no response, decided to call MS Active Source (855-474-3065) for an update… was on hold for 30 minutes before getting through to a representative who again pulled up my file on their computer… they said that they have been overwhelmed with tecfidera cases and that they were doing their best to process them… after asking me a few basic financial questions, they said they would forward my case to their research team who would get back to me asap… the explanations all seemed reasonable so my tecfidera journey is on hold until they call me… stay tuned…

Got a call from Accredo Pharmacy (800-803-2523) with co-payment information… was told my co-pay for the 30 day tecfidera starter pack would be $2200… after picking myself up off the floor, they explained that it was 120mg bid for 7 days and 240mg bid thereafter… as my head was crunching the costs, they told me of a co-pay assistance program from MS Active Source (855-474-3065)… decided to hold up the order and call about possible co-pay assistance… after three calls, with waiting times of 5 minutes – 10 minutes – and finally 20 minutes, got to speak with a representative who pulled up my file on their computer… after asking me a few questions, they said that, given my insurance plan, they would start a process to get me the tecfidera at no cost through end of year… after picking myself up off the floor again, they said they would get back to me in a few days… a totally amazing unexpected outcome…

Got a call from insurance company saying that my prior authorization request for tecfidera had been received from my doctor and had been approved for payment… if it was possible for a multiple sclerosis patient to do back flips that is what would be happening right now… amazing outcome… 24 hour turn around time… doing the happy dance… called Accredo Pharmacy (800-235-8498) with the news and was told that they would re-start my request in their computer… they said it would take 3-5 business days to get the co-pay information before they could send me the prescription… my tecfidera journey continues…

Called my insurance company and spoke to a very nice customer service representative… they confirmed that tecfidera had recently been added to their formulary for multiple sclerosis patients… they explained the co-payment structure of my pharmacy plan… 33% during phase one… 16% during phase two… 5% during phase three… phase three being the catastrophic phase… and 55K annual tecfidera cost puts me there rather quickly… they then opened a prior authorization case for me and gave me a case number… they said they would fax the prior authorization to my doctor and would respond within 72 hours of receiving the needed information from my physician… after thanking them for their help, it was time to call my doctor to let them know a fax would be coming from insurance company… the nurse assured me they would handle it promptly… all in all a better than expected outcome… stay tuned…

Spoke with a support person from Accredo Pharmacy (800-235-8498) who told me that my claim was rejected by my insurance company because it did not have a prior authorization… will now need to contact my insurance company and find out what needs to be done to obtain a prior authorization… my tecfidera adventure continues…

Been a week now with no call back from Biogen, so took some time today to check on progress… talked to a support person from Accredo Pharmacy (800-235-8498) about tecfidera order… they apparently fill the orders for Biogen… was told my order had been assigned for processing… they are checking with my insurance company about coverage… said they will get back to me asap… the waiting game continues…

Called Biogen to confirm receipt of fax from doctor for tecfidera… they acknowledged receipt and said it is in queue to be processed with many other requests… they said someone will call… happy with my progress just two weeks post FDA approval… stay tuned…

Got a call from the neurologist’s nurse this morning to tell me the doctor agreed to prescribe tecfidera for me… asked nurse if I could drop off the forms that needed to be faxed to Biogen and she said yes… dropped what I was doing and delivered the forms to the office… nurse will get doctor to sign and fax them to Biogen… next step will be to get insurance to cover the costs… 55K yearly… thus far it is not on the formulary but it was just approved by the FDA… the journey continues…

Sent an e-mail to the neurologist today… said now that the FDA had approved BG12, I would like to try tecfidera… said I knew it was approved for relapsing remitting but the clinical trials showed some impressive improvements for some really bad off patients… told doctor that I had been waiting 30 years for a medicine like this, the first to have little if any side effects and no box warnings… said that I had downloaded the paper work from the Biogen website that needed to be faxed to get the process going and have the prescription shipped from a specialty pharmacy… wanted to make sure my doctor knew I was serious about this request… waiting to hear back from neurologist… stay tuned…

Got a call back from the neurologist’s nurse saying that the doctor said tecfidera was not approved for my type of multiple sclerosis… She said it was approved for relapsing remitting not primary progressive… Told her I knew that and to tell the doctor I still want an off label prescription for tecfidera… Waiting for call back from doctor…

Stopped by neurology desk today, after a primary care doctor appointment, to get the ball rolling and make a request for a tecfidera prescription… Hope to hear back from doctor in few days…

After years of successful clinical trials, the FDA has finally approved BG12 for multiple sclerosis… now known as Tecfidera… and available at $55,000 a year… let’s get started…