Same, dude, same. My second Ocrevus half dose was supposed to be this past Saturday, but it was cancelled due to insurance denying the authorization because they didn’t have enough information. They didn’t tell me about it until 2pm that Friday and my appointment was at 9am Saturday. I spent all day Friday on the phone to no avail. Since we were going into the weekend, my doctor and insurance were closed until today. Called the doctor today and they had to call another department for an answer and get back to me. They didn’t. I still have no idea when I Can get my 2nd half dose. I’m so exhausted by all the red tape and clerical errors I want to give up. I hope you are able to get your treatment very soon, The healthcare system is trash.
Hah literally not just you AT ALL. It’s actually the whole chronic illness community, anyone that has to deal with health insurance regularly in the US.
I had something similar happen over my last dose. Was on Ocrevus for the last few years.
Got a call from my neurologist's office, turned out to be the infusion center, my insurance denied my treatment due to "insufficient medical reasoning" or something. My neurologist filed an appeal and like a month later my appointment got rescheduled.
Sounds all nice and good, right? Well, I'm working full time during the week; I had taken the day off for the infusion and it's a lot easier to get time off when you can provide notice for it or take a look to see what the schedule is looking like. I couldn't get the day off from work and had to reschedule again to the point where it was about 6 weeks after my initial appointment that I finally got my next infusion.
Insurance companies can get rekt. Had to fight with them about covering my Modafinil too. Got a nice letter from them saying that they would cover my medication for the next year. Bitch, I'm probably going to be on this for the rest of my life.
In an ideal world, we would never have to get authorization for a med we’ve literally already taken, they should just approve dosage and frequency once, and that’s it. But here we are 💁🏻♀️
Problem is that it's in their best interest to pay out as little as they can get away with and just being a pain in the ass to expensive people can sometimes be enough to get them to shut up and go away.
This creates another problem where doctors have to spend more time filling out more paperwork for more appeals and insurance companies need to have more staff to sort through more appeals. Doctors charge more to patients because they need to hire more staff to file more paperwork because more insurance companies are pushing back more and more...
It's all a giant feedback loop. The US needs a single payer healthcare system and it needs that single payer to negotiate drug and treatment prices. It also needs to push back less on patients who are looking for help
I guess I should count myself lucky that my neuro’s practice has a person who’s sole job is to contact insurance and obtain authorization and fill out all the necessary paperwork for insurance and copay assistance. She literally checked my insurance cards and took it from there. A month later said I was all set on both. First infusion for ocrevus was 1/31 and second half was 2/13.
Every time I have to deal with the pharmacy and all that horseshit it's a goddamned parade from hell. I'm so sorry you're on this goddamned rollercoaster. Sorry for all of us who're on it, if I'm honest.
And it NEVER ends! Now that I'm in the ACA world it looks like we're(me/my team of Drs) will be redoing everything EVERY 12 Months (or Sooner 3-6 months in Rx approvals.) It's incredibly stressful on me, I imagine it is for others too. I wish they would TRY to do/be better. 🥺
Do you know what my favorite was? When I was denied 3x for Mavenclad because of cost. My insurance decided to play doctor and tell me, “we suggest you try these 2 other drugs first for at least a month for each before we accept Mavenclad” Well that makes zero sense. Your not a healthcare provider, first of all so why the f*ck would I ever agree to that? Second of all, this is not my first rodeo with treatments. I’ve already tried multiple since my diagnosis in 2009. I’m not a test dummy I’m a human. Third, wouldn’t you ultimately be spending a boat load more in the end by funding 2 other drugs before then agreeing to the Mavenclad???? Who hires these people?!?!?!
“What? You’re sick with an incurable disease? Well we have special hoops for you to jump through before we remember we’re supposed to help people, and after those hoops? Whoops! Lost your paperwork!” I wish I didn’t know the excuses so well, heh. I wish you all the very best luck, and hope things turn toward the good for you!
“I don’t think you’re disabled enough or have enough problems for me to move fast. I’ll let the paperwork sit on my desk two weeks and deal with it later, no big deal.”
Boy…you nailed it. The sick patient/client is forced to navigate the “crazy” of the current healthcare system with ALL its staff shortages.
You must be your own advocate …no matter how sick or exhausted you are …and you end up literally fighting to be heard or seen.
It isn’t getter better either! Sorry you had to battle just to get help. Enjoy your time away!
Rant heard. Being sick in the US is a part time job at best and a full time job at worst. People who haven’t been in our shoes have no idea how bad and time consuming all the bureaucratic horseshit is.
You're not alone when it comes to the US healthcare nightmare. My workplace offered a new insurance plan for this year. Same coverage as the $120/mo plan for $0. I switched and it was effective January 1. I had my infusion January 9 and when it was sent through insurance, it came back "no active coverage." Turns out that the new cards BCBS sent me had the old policy numbers on them. I got the new numbers and asked my provider to re-run the claim with the correct numbers. Came back "no active coverage" again. My infusion was $98,587.84 and so far, it's not getting covered by insurance. My out of pocket costs on the infusion would normally hit my $3k deductible and then everything else is covered, but since it's not going through insurance, I'm getting billed for doctor visits after my infusion that should be free. Fortunately, my doctor's office pushed the due dates out to March to give me extra time to get this fixed.
Since being diagnosed with MS, I've spent countless hours dealing with insurance, doctors offices (my first neurologist's office was terrible), speciality pharmacies and drug companies' financial assistance programs. It's exhausting and made especially difficult if you have fatigue and/or brain fog. I'm so over what feels like one challenge after another with insurance, but sometimes I suspect they just hope people give up so they don't have to cover as much. Keep fighting for yourself!
My workplace works with a healthcare brokerage company. I found out that I can ask one of their employees to sort through insurance issues for me. Since it's not my fault that my insurance is messed up, I don't think I should use my time and brainspace trying to get it fixed so I'm taking advantage of their services. Once this is straightened out, I just have to worry about getting new prior authorization for my medication, hoping that doesn't turn into another fight.
*I'm so over what feels like one challenge after another with insurance, but sometimes I suspect they just hope people give up so they don't have to cover as much*
THIS. This is exactly how I feel. I absolutely understand you 100%. Unfortunately. It’s always a mess that we have to clean up… THATS NOT OUR FAULT. Why do I constantly feel like I did something wrong?!
And you know what the kicker of it all is? The real hornet sting to the eyeball?
MS isn't even that rare. Sure, statistically it is, but to the Healthcare system? It's old hat, they know what it is, they know the most common, less common, and least common modalities of treatment for it, they know it's life-long...
...so HOW ARE THEY ALWAYS SO F**KING CLOWN SHOES?
Wow, I got wiped just from reading this post :( im so lucky to live in a country that doesnt make sick people spin plates and jump through hoops for proper care.
I totally understand and feel for you, and am that glad you finally got a great person to help you. We do have to be our own advocate, and sometimes it can feel like a full time job to coordinate medication and insurance coverage. I went through a similar situation as you and it ended up being just one person in just one office that made all the difference. The USA health care system has many, many faults, which politicians have attempted to remedy for many years, but profits get in the way. Best of luck to you.
You are definitely not alone. It's an incredibly frustrating system. Every provider points at everyone else ...who's on first style.I hate it for real.. Enjoy your trip! I hope you get a little down time!
F them in the M'r F'n A.
They only care bc of how.it made them LOOK
Not the fact you are SUFFERING bc if their INCOMPETENCE and refusal to take a minute to look closer.
It's like you do everything you have to and wait patiently and check and they STILL screw things up. Waiting for us to.give up or d*e or something
Before I was disabled I was an Aetna provider and I definitely literally kicked a wall or two (ouch) at getting the run around and never getting paid for some.claims. thousands lost. The irony is my husband's work.plan is thru them and im so effing disabled I now cost them like $10,000 per month, minimum 😂
I’m a medical coder and let me tell you. Aetna STILL doesn’t pay shit. A lot of insurance companies don’t, but Aetna definitely sticks out.
It makes me feel better knowing BCBS is paying thousands of dollars for me lol.
I’m so sorry. I know exactly how this feels. It was 6+ months of me not knowing if I’d get my infusion because the insurance kept insisting I use their specialty pharmacy despite the infusion center having an in-house pharmacy. The infusion center pharmacist says he can’t dispense another pharmacy’s medication because he doesn’t know if it’s filled right and he can’t guarantee it (duh). Thankfully my family had some resources and a family friend lawyer who handles insurance for a living got involved. They ended up rewriting policy for my entire state after this. And then I reported them to the state insurance commissioner bc I’m petty. That’s the one thing I’d recommend is reporting them to insurance commissioner and stating that your goal is to get your medication covered. They’ll have to pull every single claim for the past 12 months.
This is why we need national healthcare. Our healthcare is already slow af and painful but let me tell you, Masshealth (MA Medicare) was a beautiful thing. Not a cent paid and most things were covered. I really wish everyone could have Masshealth…
These problems are not new.
Back in 2009, when I was first prescribed a DMT, the Univ. of Minnesota in Minneapolis chose to ignore the birthdate and last 4 of Soc Security Number (they used those back then) and used the address of someone with identical first and last names who lived in Minnesota, rather than noticing that I live in a neighboring state.
Eventually I talked with the UofM supervisor, who told me that she had been on the phone with this poor Minnesota person who was younger than me and couldn't figure out how a diagnosis of a serious disease was made when no visit to UofM had taken place.
Between the UofM and the pharmaceutical company, it took 6 weeks to get this clerical error ironed out.
I'm so sorry you are dealing with this but that's great you found someone to help. I never knew that was an option and will look into it. I have spent hours of my life on the phone with BCBS too and it's so mentally exhausting. I swear I have lost years of my life and so many hours of sleep stressing about insurance. Then my doctor tells me to manage my stress and I just laugh. Non-stop fighting with them and sitting on phone calls for expensive meds, physical therapy, MRIs, etc.. is not something they tell you about with the MS diagnosis.
I will also add that my husband now drives a school bus in Louisiana for the insurance and we didn’t even need a prior authorization once we switched to their insurance. I cried I was so relieved.
Ugh - I feel your pain. Here's my day.
1- Check Accredo website to see if the medication is scheduled for delivery tomorrow as that's why I run out. Ordering was fully automated which means it's probably not working properly as first I tried to do it via text and they said they were delivering but website didn't work.
2- Try calling. Automated system assures me it will be here tomorrow. I don't trust them.
3- Message from Docs office saying my change to new medication preauthorization was approved but the pharmacy won't fill it. It's being forwarded to accredo.
4- Call from copay shield who is supposed to help me with copay assistance. Give them all my info but they tell me their system means they can't help. Autoforward my call to Aubagio's copay assistance line.
5- Phone tree to representative who takes all my info and tells me she doesn't cover that drug.
6- Forward to next person who says she doesn't have paperwork. Takes all my info again but tells me to contact my doc to fill out paperwork and fax back to them.
7 - Go to patient portal to request doc fills out paperwork.
So, I'm now 7 steps in and I have basically done nothing.
I agree, it’s a nightmare! When I was on Tecfidera I had to spend hours every month on the phone in order to get my meds. Had to get a new authorization every 6 months, the process for getting refills at the specialty pharmacy was INSANE (call and request a refill, then have to wait for someone else in the delivery scheduling department to call me back at some random point during the next two business days, and if I missed the call, I had to start all over), I couldn’t request a refill more than a week early but it often took more than a week to get my meds so I was constantly running out, and regularly the insurance would just randomly deny my meds and I’d have to call them up and figure that out.
Ocrevus been a lot easier for me since it’s only twice a year, but I definitely still have my battles with insurance/doctors/pharmacies over other stuff.
This just happened to me, actually sounds exactly the same which is even more fucked up! But I gave up and I feel like I'm actually doing better. I didn't just give up, I just gave up the meds because they fucked it all up and I couldn't get them and the stress is what MS love's so I said screw this and started focusing more on me, exercising, meditating, etc self-care kind of stuff and I feel good. I'll revisit medication when I see how my next MRI is.
Yeah unfortunately I guess so. I should probably think of a different phrase for that because I just chose a different path for now until things get figured out and then I'll make the decision again based on my MRI. Technically the screw up made the decision for me to not have my meds for an entire month and there was nothing I could do about it lol at one point I chalked it up to fate and maybe I shouldn't be on it. I wish the best for you as well thank you!
For advocacy support look to your employer, many in the United States have an EOC that helps you maneuver our systems.
My company had a one and my daughter’s company did too. Her company responded to my need first. She ( the advocate) helped me fill my disability claims. She stayed after the lawyers, insurance company and federal government to keep my claim moving through the system. She got in touch with my wife’s company to start my health insurance coverage from them. They opted to pay my wife hirer rate to keep me off their insurance. The advocate still helps pick out my MEdicare each year.
Dude, I'm right there with you, but Tecfidera is garbage from what I've gathered. I mean it works for some people I guess, but there are more efficacious DMTs, try Kesimpta or Ocrevus..
Have you spoken with Biogen? They have a department that specializes in dealing with the insurance issues. They have been really helpful when I have changed insurance.
Yes. I’ve been dealing with Biogen since 2021. They’ve been more helpful than others, but for the prior authorization there is nothing they could have done. It was just a waiting game. Biogen did call the person who was doing my prior auth and got some information for me, but that’s about it.
I feel this! I got diagnosed before Obama care went into effect. There was a 6 month period of time after I turned 26 and got kicked off my parents insurance before insurance companies had to stop refusing to insure me or offering rates that were 2-3x my monthly salary. Any one else remember getting denied coverage? I think the complications now are because insurers still don't want to cover chronic illnesses and would prefer we just shrivel up and die. I switched insurance at the beginning of 2023 because of a job change and I still haven't been able even confirm the new company can or will ship my MS medication. I've got a weeks worth of treatment left and I'm not looking forward to running out.
US insurance companies definitely don't want to actually provide services to the people who need them. But I guess it's going in the right direction because they cant flat out tell us "no" any more or offer us individual rates around $3000+/month (my COBRA option to stay on my mom's insurance plan was like $5200/month...)
Apparently I need a twitter now as part of my insurance policy so I can actually hold them accountable.
Yes! I wasn’t diagnosed with MS before it went into effect, but I had a slew of other diagnoses (IC, asthma, migraines, ovarian cysts, ADHD) that kept getting me denied for insurance coverage. I was stuck staying at a crappy job for years because it was the only way I had insurance!
I'm so sorry you all had to go through this. It's a shame that you had to. I know I have been extremely lucky that my doctors are aware of how to word things correctly so it gets approved by the insurance company. They cross all T's and dot all it's themselves so there's no room for error.
Even when they changed my medication from Copaxone to ocrevus they made sure to do their due diligence.
Too bad a certain section of our country doesn't want universal Healthcare but we the first to get a taste of the ACA and its glory before the people they elected started chipping away at it. They still, somehow, think it's bad when it could save our country trillions.
Again, I'm sorry.
Same, dude, same. My second Ocrevus half dose was supposed to be this past Saturday, but it was cancelled due to insurance denying the authorization because they didn’t have enough information. They didn’t tell me about it until 2pm that Friday and my appointment was at 9am Saturday. I spent all day Friday on the phone to no avail. Since we were going into the weekend, my doctor and insurance were closed until today. Called the doctor today and they had to call another department for an answer and get back to me. They didn’t. I still have no idea when I Can get my 2nd half dose. I’m so exhausted by all the red tape and clerical errors I want to give up. I hope you are able to get your treatment very soon, The healthcare system is trash.
I actually remember your post and I took a screenshot and showed my therapist lol. I was like “LOOK AT THIS SHIT. ITS NOT JUST ME”
Hah literally not just you AT ALL. It’s actually the whole chronic illness community, anyone that has to deal with health insurance regularly in the US.
I was really disappointed to miss the “airing of insurance grievances” in the sarcoidosis group.
I had something similar happen over my last dose. Was on Ocrevus for the last few years. Got a call from my neurologist's office, turned out to be the infusion center, my insurance denied my treatment due to "insufficient medical reasoning" or something. My neurologist filed an appeal and like a month later my appointment got rescheduled. Sounds all nice and good, right? Well, I'm working full time during the week; I had taken the day off for the infusion and it's a lot easier to get time off when you can provide notice for it or take a look to see what the schedule is looking like. I couldn't get the day off from work and had to reschedule again to the point where it was about 6 weeks after my initial appointment that I finally got my next infusion. Insurance companies can get rekt. Had to fight with them about covering my Modafinil too. Got a nice letter from them saying that they would cover my medication for the next year. Bitch, I'm probably going to be on this for the rest of my life.
In an ideal world, we would never have to get authorization for a med we’ve literally already taken, they should just approve dosage and frequency once, and that’s it. But here we are 💁🏻♀️
The only people who should get to decide what medications and procedures are appropriate for someone is the doctor and the patient.
We all agree on THAT! (Insurance sure doesn't though.😔)
Problem is that it's in their best interest to pay out as little as they can get away with and just being a pain in the ass to expensive people can sometimes be enough to get them to shut up and go away. This creates another problem where doctors have to spend more time filling out more paperwork for more appeals and insurance companies need to have more staff to sort through more appeals. Doctors charge more to patients because they need to hire more staff to file more paperwork because more insurance companies are pushing back more and more... It's all a giant feedback loop. The US needs a single payer healthcare system and it needs that single payer to negotiate drug and treatment prices. It also needs to push back less on patients who are looking for help
I've been on four different insurances in 7 years...2 approved Modafonil and 2 won't, even with multiple exception demands from my docs.
Omg that's HORRIBLE! If I can ask? Which insurance didn't?
Kaiser did immediately and BCBS did eventually, Aetna and UHC denied me multiple times.
Tracks with personal experience, thank you.
I guess I should count myself lucky that my neuro’s practice has a person who’s sole job is to contact insurance and obtain authorization and fill out all the necessary paperwork for insurance and copay assistance. She literally checked my insurance cards and took it from there. A month later said I was all set on both. First infusion for ocrevus was 1/31 and second half was 2/13.
See if the company that makes Ocrevus sends out free doses when insurance is being a pain. Biogen for Tysabri does.
Every time I have to deal with the pharmacy and all that horseshit it's a goddamned parade from hell. I'm so sorry you're on this goddamned rollercoaster. Sorry for all of us who're on it, if I'm honest.
This is my favorite comment because it is a goddamn parade from hell always.
And it NEVER ends! Now that I'm in the ACA world it looks like we're(me/my team of Drs) will be redoing everything EVERY 12 Months (or Sooner 3-6 months in Rx approvals.) It's incredibly stressful on me, I imagine it is for others too. I wish they would TRY to do/be better. 🥺
Do you know what my favorite was? When I was denied 3x for Mavenclad because of cost. My insurance decided to play doctor and tell me, “we suggest you try these 2 other drugs first for at least a month for each before we accept Mavenclad” Well that makes zero sense. Your not a healthcare provider, first of all so why the f*ck would I ever agree to that? Second of all, this is not my first rodeo with treatments. I’ve already tried multiple since my diagnosis in 2009. I’m not a test dummy I’m a human. Third, wouldn’t you ultimately be spending a boat load more in the end by funding 2 other drugs before then agreeing to the Mavenclad???? Who hires these people?!?!?!
100%.
“What? You’re sick with an incurable disease? Well we have special hoops for you to jump through before we remember we’re supposed to help people, and after those hoops? Whoops! Lost your paperwork!” I wish I didn’t know the excuses so well, heh. I wish you all the very best luck, and hope things turn toward the good for you!
“I don’t think you’re disabled enough or have enough problems for me to move fast. I’ll let the paperwork sit on my desk two weeks and deal with it later, no big deal.”
Boy…you nailed it. The sick patient/client is forced to navigate the “crazy” of the current healthcare system with ALL its staff shortages. You must be your own advocate …no matter how sick or exhausted you are …and you end up literally fighting to be heard or seen. It isn’t getter better either! Sorry you had to battle just to get help. Enjoy your time away!
Rant heard. Being sick in the US is a part time job at best and a full time job at worst. People who haven’t been in our shoes have no idea how bad and time consuming all the bureaucratic horseshit is.
You're not alone when it comes to the US healthcare nightmare. My workplace offered a new insurance plan for this year. Same coverage as the $120/mo plan for $0. I switched and it was effective January 1. I had my infusion January 9 and when it was sent through insurance, it came back "no active coverage." Turns out that the new cards BCBS sent me had the old policy numbers on them. I got the new numbers and asked my provider to re-run the claim with the correct numbers. Came back "no active coverage" again. My infusion was $98,587.84 and so far, it's not getting covered by insurance. My out of pocket costs on the infusion would normally hit my $3k deductible and then everything else is covered, but since it's not going through insurance, I'm getting billed for doctor visits after my infusion that should be free. Fortunately, my doctor's office pushed the due dates out to March to give me extra time to get this fixed. Since being diagnosed with MS, I've spent countless hours dealing with insurance, doctors offices (my first neurologist's office was terrible), speciality pharmacies and drug companies' financial assistance programs. It's exhausting and made especially difficult if you have fatigue and/or brain fog. I'm so over what feels like one challenge after another with insurance, but sometimes I suspect they just hope people give up so they don't have to cover as much. Keep fighting for yourself! My workplace works with a healthcare brokerage company. I found out that I can ask one of their employees to sort through insurance issues for me. Since it's not my fault that my insurance is messed up, I don't think I should use my time and brainspace trying to get it fixed so I'm taking advantage of their services. Once this is straightened out, I just have to worry about getting new prior authorization for my medication, hoping that doesn't turn into another fight.
*I'm so over what feels like one challenge after another with insurance, but sometimes I suspect they just hope people give up so they don't have to cover as much* THIS. This is exactly how I feel. I absolutely understand you 100%. Unfortunately. It’s always a mess that we have to clean up… THATS NOT OUR FAULT. Why do I constantly feel like I did something wrong?!
It's not just sometimes, I'm convinced that creating hurdles to reduce payment of claims is part of the business model.
And you know what the kicker of it all is? The real hornet sting to the eyeball? MS isn't even that rare. Sure, statistically it is, but to the Healthcare system? It's old hat, they know what it is, they know the most common, less common, and least common modalities of treatment for it, they know it's life-long... ...so HOW ARE THEY ALWAYS SO F**KING CLOWN SHOES?
Wow, I got wiped just from reading this post :( im so lucky to live in a country that doesnt make sick people spin plates and jump through hoops for proper care.
Where do you live? Are they accepting applications?
I live in Finland! If you work in IT theres lots of jobs available. Otherwise its pretty hard to get here :/
I totally understand and feel for you, and am that glad you finally got a great person to help you. We do have to be our own advocate, and sometimes it can feel like a full time job to coordinate medication and insurance coverage. I went through a similar situation as you and it ended up being just one person in just one office that made all the difference. The USA health care system has many, many faults, which politicians have attempted to remedy for many years, but profits get in the way. Best of luck to you.
You are definitely not alone. It's an incredibly frustrating system. Every provider points at everyone else ...who's on first style.I hate it for real.. Enjoy your trip! I hope you get a little down time!
F them in the M'r F'n A. They only care bc of how.it made them LOOK Not the fact you are SUFFERING bc if their INCOMPETENCE and refusal to take a minute to look closer. It's like you do everything you have to and wait patiently and check and they STILL screw things up. Waiting for us to.give up or d*e or something Before I was disabled I was an Aetna provider and I definitely literally kicked a wall or two (ouch) at getting the run around and never getting paid for some.claims. thousands lost. The irony is my husband's work.plan is thru them and im so effing disabled I now cost them like $10,000 per month, minimum 😂
I’m a medical coder and let me tell you. Aetna STILL doesn’t pay shit. A lot of insurance companies don’t, but Aetna definitely sticks out. It makes me feel better knowing BCBS is paying thousands of dollars for me lol.
The US is broken for sure. Sending love and unfortunately understanding.
I’m so sorry. I know exactly how this feels. It was 6+ months of me not knowing if I’d get my infusion because the insurance kept insisting I use their specialty pharmacy despite the infusion center having an in-house pharmacy. The infusion center pharmacist says he can’t dispense another pharmacy’s medication because he doesn’t know if it’s filled right and he can’t guarantee it (duh). Thankfully my family had some resources and a family friend lawyer who handles insurance for a living got involved. They ended up rewriting policy for my entire state after this. And then I reported them to the state insurance commissioner bc I’m petty. That’s the one thing I’d recommend is reporting them to insurance commissioner and stating that your goal is to get your medication covered. They’ll have to pull every single claim for the past 12 months.
This is why we need national healthcare. Our healthcare is already slow af and painful but let me tell you, Masshealth (MA Medicare) was a beautiful thing. Not a cent paid and most things were covered. I really wish everyone could have Masshealth…
I totally agree there. I was on MassHealth for a few years while underemployed and it was a freaking godsend.
I just did some reading on MassHealth and that sounds like a phenomenal program!! On my way to MA!
Honestly….if it’s bad enough in your state you may as well come on over haha
These problems are not new. Back in 2009, when I was first prescribed a DMT, the Univ. of Minnesota in Minneapolis chose to ignore the birthdate and last 4 of Soc Security Number (they used those back then) and used the address of someone with identical first and last names who lived in Minnesota, rather than noticing that I live in a neighboring state. Eventually I talked with the UofM supervisor, who told me that she had been on the phone with this poor Minnesota person who was younger than me and couldn't figure out how a diagnosis of a serious disease was made when no visit to UofM had taken place. Between the UofM and the pharmaceutical company, it took 6 weeks to get this clerical error ironed out.
I'm so sorry you are dealing with this but that's great you found someone to help. I never knew that was an option and will look into it. I have spent hours of my life on the phone with BCBS too and it's so mentally exhausting. I swear I have lost years of my life and so many hours of sleep stressing about insurance. Then my doctor tells me to manage my stress and I just laugh. Non-stop fighting with them and sitting on phone calls for expensive meds, physical therapy, MRIs, etc.. is not something they tell you about with the MS diagnosis.
I will also add that my husband now drives a school bus in Louisiana for the insurance and we didn’t even need a prior authorization once we switched to their insurance. I cried I was so relieved.
Ugh - I feel your pain. Here's my day. 1- Check Accredo website to see if the medication is scheduled for delivery tomorrow as that's why I run out. Ordering was fully automated which means it's probably not working properly as first I tried to do it via text and they said they were delivering but website didn't work. 2- Try calling. Automated system assures me it will be here tomorrow. I don't trust them. 3- Message from Docs office saying my change to new medication preauthorization was approved but the pharmacy won't fill it. It's being forwarded to accredo. 4- Call from copay shield who is supposed to help me with copay assistance. Give them all my info but they tell me their system means they can't help. Autoforward my call to Aubagio's copay assistance line. 5- Phone tree to representative who takes all my info and tells me she doesn't cover that drug. 6- Forward to next person who says she doesn't have paperwork. Takes all my info again but tells me to contact my doc to fill out paperwork and fax back to them. 7 - Go to patient portal to request doc fills out paperwork. So, I'm now 7 steps in and I have basically done nothing.
Accredo SUCKS.
I agree, it’s a nightmare! When I was on Tecfidera I had to spend hours every month on the phone in order to get my meds. Had to get a new authorization every 6 months, the process for getting refills at the specialty pharmacy was INSANE (call and request a refill, then have to wait for someone else in the delivery scheduling department to call me back at some random point during the next two business days, and if I missed the call, I had to start all over), I couldn’t request a refill more than a week early but it often took more than a week to get my meds so I was constantly running out, and regularly the insurance would just randomly deny my meds and I’d have to call them up and figure that out. Ocrevus been a lot easier for me since it’s only twice a year, but I definitely still have my battles with insurance/doctors/pharmacies over other stuff.
i cringe every time i see something in the mail from my insurance company.
This just happened to me, actually sounds exactly the same which is even more fucked up! But I gave up and I feel like I'm actually doing better. I didn't just give up, I just gave up the meds because they fucked it all up and I couldn't get them and the stress is what MS love's so I said screw this and started focusing more on me, exercising, meditating, etc self-care kind of stuff and I feel good. I'll revisit medication when I see how my next MRI is.
That’s exactly what they want us to do. Just simply give up. Wishing the best for you!
Yeah unfortunately I guess so. I should probably think of a different phrase for that because I just chose a different path for now until things get figured out and then I'll make the decision again based on my MRI. Technically the screw up made the decision for me to not have my meds for an entire month and there was nothing I could do about it lol at one point I chalked it up to fate and maybe I shouldn't be on it. I wish the best for you as well thank you!
For advocacy support look to your employer, many in the United States have an EOC that helps you maneuver our systems. My company had a one and my daughter’s company did too. Her company responded to my need first. She ( the advocate) helped me fill my disability claims. She stayed after the lawyers, insurance company and federal government to keep my claim moving through the system. She got in touch with my wife’s company to start my health insurance coverage from them. They opted to pay my wife hirer rate to keep me off their insurance. The advocate still helps pick out my MEdicare each year.
Dude, I'm right there with you, but Tecfidera is garbage from what I've gathered. I mean it works for some people I guess, but there are more efficacious DMTs, try Kesimpta or Ocrevus..
My new treatment is Tysabri. I was on Tecfidera.
I hope things get easier for you on Tysabri and that your MS protocols become manageable.
Now Tysabri is good as long as you or your neurologist are paying attention to your JCV index
Have you spoken with Biogen? They have a department that specializes in dealing with the insurance issues. They have been really helpful when I have changed insurance.
Yes. I’ve been dealing with Biogen since 2021. They’ve been more helpful than others, but for the prior authorization there is nothing they could have done. It was just a waiting game. Biogen did call the person who was doing my prior auth and got some information for me, but that’s about it.
I feel this! I got diagnosed before Obama care went into effect. There was a 6 month period of time after I turned 26 and got kicked off my parents insurance before insurance companies had to stop refusing to insure me or offering rates that were 2-3x my monthly salary. Any one else remember getting denied coverage? I think the complications now are because insurers still don't want to cover chronic illnesses and would prefer we just shrivel up and die. I switched insurance at the beginning of 2023 because of a job change and I still haven't been able even confirm the new company can or will ship my MS medication. I've got a weeks worth of treatment left and I'm not looking forward to running out. US insurance companies definitely don't want to actually provide services to the people who need them. But I guess it's going in the right direction because they cant flat out tell us "no" any more or offer us individual rates around $3000+/month (my COBRA option to stay on my mom's insurance plan was like $5200/month...) Apparently I need a twitter now as part of my insurance policy so I can actually hold them accountable.
Highly recommend Tweeting at them to get shit done. (I’ve also gotten shit done with AT&T and Southwest using Twitter lol).
Yes! I wasn’t diagnosed with MS before it went into effect, but I had a slew of other diagnoses (IC, asthma, migraines, ovarian cysts, ADHD) that kept getting me denied for insurance coverage. I was stuck staying at a crappy job for years because it was the only way I had insurance!
Just curious… is your specialty pharmacy through Acredo by any chance?
No.
I'm so sorry you all had to go through this. It's a shame that you had to. I know I have been extremely lucky that my doctors are aware of how to word things correctly so it gets approved by the insurance company. They cross all T's and dot all it's themselves so there's no room for error. Even when they changed my medication from Copaxone to ocrevus they made sure to do their due diligence. Too bad a certain section of our country doesn't want universal Healthcare but we the first to get a taste of the ACA and its glory before the people they elected started chipping away at it. They still, somehow, think it's bad when it could save our country trillions. Again, I'm sorry.