Not a happy camper!: I was recently... - My MSAA Community

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Not a happy camper!

hairbrain4 profile image
48 Replies

I was recently approved by my insurance for Ocrevus. I thought Yeah!!! Then I find out that It won't pay for everything. I have to come up with a copay of $315 which is the copay for any hospital visits. Then I found out that the infusion center that is only 5 miles from my house was just approved to do Ocrevus infusions, but my Neuro won't approve it because if something happens she or a colleague wouldn't be able to get there. So now if I want to get the infusions I have to drive 2 hours to the infusion center, get the infusion, drive home for 2 hours & pay $315. Mean time my husband, has to find something to do during the infusion, which wouldn't be a bad thing except he is disabled also & can barley walk due to back problems and enlarged cyst on his pancreas the size of an orange. When at home he will lay down for 30 minutes & get up move around & do something around the house, then sit for awhile & then go lay down again. He is in major pain 24/7 & there isn't anything they can do for him.

OK, I've had my rant. Thanks for listening. I know things will work out for the best, they always do, sometimes I get impatient. There's times like this that the solution seems so easy and the best way all around and when it doesn't work out that way it just plain frustrates me. It's also frustrating when insurance and doctors think they know you better than you know yourself. I can understand my Neuro's point of view, especially since this would be the first infusion and no body knows what will happen. So that being said I am waiting to see if I have to pay a copay at the other infusion center & if I do I will try to see if I can get help for that. It will all be good in the long run.

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hairbrain4
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48 Replies
greaterexp profile image
greaterexp

Can the pharmaceutical company eat the copay?

I’m sorry it seems so complicated. I’ll be praying that it gets worked out for the best.

Keep us posted please.

hairbrain4 profile image
hairbrain4 in reply to greaterexp

Thank you! Prayers work!

anaishunter profile image
anaishunter

Try to get the pharmaceutical companies to take the co-pay. They did it for me. My neuro and his team took care of all the paperwork - which was a pleasant surprise! The approval for the copay pick-up by the pharmaceutical company came after my 1st Ocrevus treatment, but I did not want to postpone the treatment. We're all in this for the long run (yeeeeaaarrrrsss), so it's worth doing all the paperwork to get all the possible coverage.

hairbrain4 profile image
hairbrain4 in reply to anaishunter

They finally approved me on their extra help plan. Thanks.

greaterexp profile image
greaterexp in reply to hairbrain4

Hallelujah!

Jazzyinco profile image
Jazzyinco

One of the Number1 main reason I am NOT taking any RX's, & going all natural!!😩 can't afford $$$copays & my body just cannot handle them real well& i'll live the Life of Prayers! 🙏🙏🙏& organics, i do hope it wrk, out for you, & ur neuro. Don't wanna get sued!😠 sorry bout that. Many Blessings--Jazmine

hairbrain4 profile image
hairbrain4 in reply to Jazzyinco

I hope a going natural works for you too!

Jazzyinco profile image
Jazzyinco in reply to hairbrain4

Will do, so far very good! 👍👍Spacisity us wat down to a minimum now ! & i can go wrk. Out on the bikes @ the community center for excersise. I am loving this new diet! Just wish i could gain some more weight somehow!😍👍 am trying. Blessings---Jazmine

ssdw1958 profile image
ssdw1958

Have you called the company that makes the Ocrevus and if you haven’t you need to they may pay for your copay. Next question isn’t there some way your doctors can work it out that you can go to the place closer to you for the infusion let them know about your husband and his issues. Then if that doesn’t work out ask the place where your having the infusion if they can acommodate your husband. My husband went to my infusion but yes I know he doesn’t have the same issues as your husband but something as to give in to help you out. Good luck and I have had the Ocrevus the only issue I had was I got tired and the second one my legs I was having issues because I was very tired.

I hope it works out for you and your husband.

hairbrain4 profile image
hairbrain4 in reply to ssdw1958

It was the drug company that told me I had to pay the copay in the first place. But it has all worked out. I was approved on their extra help plan. This hospital will accommodate my husband if there is room. It's just a long drive and it hurts him to sit for that long and then really no place to lay down after we get there. But we will get through it. Thanks.

Gma06 profile image
Gma06

genentech-access.com/hcp/br...

Enroll in this program for financial assistance with co-pay!

ssdw1958 profile image
ssdw1958 in reply to Gma06

Well I remember I had called the Ocrevus company to see if everything was covered $$and they said my insurance company covered it. Then I asked if it wasn’t covered what would happen and they said that they would cover the cost.

Gma06 profile image
Gma06 in reply to ssdw1958

Told me the same, but when I called to check again, just to be sure, another lady told me I had to enroll and she walked me through the enrollment.

ssdw1958 profile image
ssdw1958 in reply to Gma06

When you call these places do you get a name or a confermation number. Because that has helped me in the past they when they say we don’t have that information I pull out my note book and I read off the name, confirmation number and the date that has helped me.

hairbrain4 profile image
hairbrain4 in reply to ssdw1958

Always, always, always get a name, badge# if available and phone # and extension if possible, date & time of call. Most of the time conversations are recorded, if you can provide them with that information they can look it up even if they aren't recorded, they have to post notations of who they talked to and what they talked about. We use that for who ever we are talking to, utility company, cable/satellite etc.

hairbrain4 profile image
hairbrain4 in reply to Gma06

I had enrolled in their plan. It's just that my insurance didn't contract with the infusion center, hence the large copay. Since my doc doesn't want me to use that center anyway I will now be covered for all of it at the other center since they finally approved me.

Gma06 profile image
Gma06 in reply to hairbrain4

The infusion center I went to called my insurance and got preapproval. I had both halves of first infusion, and when I finally received the EOB, the insurance denied it. I appealed, and insurance determined it was not medically necessary when I had infusions in March and total bill is $118,000. Don’t understand full price for only half infusion. Then received approval letter for my next infusion in September saying they now found it medically necessary. What! It is now but not 4 months ago! Still fighting insurance! Stressed!

hairbrain4 profile image
hairbrain4 in reply to Gma06

I really don't know how people sitting at a desk with no medical degree can sit there & tell a patient and their doctor that a procedure or medication is not needed. Sometimes they will insist on the generic first if there is one available then after 30 days the doctor resubmits it they will approve it. My Dad almost died because of that. He needed a heart valve replaced. They were going to use a pig valve, it was a better product and cheaper. The insurance fought it and he ended up having to get a mechanical valve because his heart was enlarged. My husband has a gaping scar down the middle of his belly because the insurance wouldn't approve a wound vac that would have helped him heal in approx. 3 months. It's been 6 years and it still isn't healed completely. I hope you keep fighting and can get your doctor involved in the fight. They tend to listen to doctors a little more than the patient.

Peruzzot profile image
Peruzzot

Good luck with the infusion I hope it makes you better even if the process aggravates you.

hairbrain4 profile image
hairbrain4 in reply to Peruzzot

Thank you!

erash profile image
erash

I guess 1 good thing is infusions will only be every 6 mos. can't the infusion place near u handle reactions?

kdali profile image
kdali in reply to erash

Exactly my thought!

hairbrain4 profile image
hairbrain4 in reply to erash

They probably can but my doc is 2 hrs away and doesn't have admitting rights to this hospital. They would have to send my up to the hospital she uses. After working for a doctor a few years ago I found out how complicated it is, especially in rural America. A doctor can't send you to just any hospital and still treat you there. They have to have admitting rights (in other words they have paid their dues and are approved by the hospital staff) But it looks like I'm not going to have to pay for anything now that I'm going to the other center.

erash profile image
erash in reply to hairbrain4

Same admitting issues in urban/suburban areas. Assume because of the literature, u would not likely need to be hospitalized for a reaction?

hairbrain4 profile image
hairbrain4 in reply to erash

Probably not, but there is always a chance & the doc's aren't going to take that chance.

kdali profile image
kdali

Sorry, this sounds like a mess. I’m glad you understand your MD’s point of view. Maybe the 2nd dose you can use the clinic closer to you?

hairbrain4 profile image
hairbrain4 in reply to kdali

It looks like I'm stuck at the farther center but at least it won't cost me anything. I was finally approved for the extra help.

kdali profile image
kdali in reply to hairbrain4

Perfect!!

Christopher4 profile image
Christopher4

My insurance won't pay for my Copaxone. I have Fidelis Healthccare. They Want me to take the generic form of it and my doctor says it would not be good for me.

OKgal profile image
OKgal in reply to Christopher4

Your doctor should appeal for brand name, if they feel strongly against the generic.

miwido profile image
miwido in reply to Christopher4

Agree w/ OKgal - get your neuro to call the insurance company. I had the same issue with a different med. My neuro called them to justify the need for the name brand and they covered it.

bxrmom profile image
bxrmom in reply to Christopher4

I agree with the other two responses, get your neuro to call the insurance and tell them they won't put you on the generic and the reasoning!

hairbrain4 profile image
hairbrain4 in reply to Christopher4

You really should have your doctor appeal their decision. They will usually listen to the doctor if they tell them why you can't take the generic. I have done that on other drugs. They drag their feet but will eventually come around.

OKgal profile image
OKgal

I’ve been following Ocrevus users and it appears there are some hoops to jump through. Apply for assistance with Genentech and out of pocket max is $5 per infusion. It gets a little hazy after this. Some have to pay for the Solumedrol and Benadryl, but the cost is minimal. Following as I’m interested in the safety of the medication for when/if I get needle fatigued with Copaxone. I’m not there yet and GA is working for me. 🙃

hairbrain4 profile image
hairbrain4 in reply to OKgal

Yes their are a few hoops to jump through. Fighting the insurance company is the hardest hoop to jump through, but persistence and prayer works! I was finally approved for the extra help from the drug company so I won't have to pay anything. I've been on copaxone for over 10 years & I just can't hardly do the shots anymore. They have become so painful especially since I changed to the 40mgs. and welts stay for days. I'm not one to jump on the band wagon cuz it looks pretty either. I have a friend at church with MS and she started on Ocrevus & has had wonderful results. She was blinded by MS and could barely walk. Now you wouldn't know she had MS at all. She has also become a spokes person for them. I can't wait to start.

OKgal profile image
OKgal in reply to hairbrain4

You give me hope. My doc keeps saying he really likes this drug, but, on the flip side he reminds me it’s still new. I dunno. 🤷‍♀️ By the time it becomes “not new”, how many years will have passed? I’m MS stable, but it’s so enticing due to the convenience of delivery. Every 6 months infusion versus 3 times a week Copaxone jabs. 🤔 Add in the perk the infusion center is 20 minutes away and his office is across the street. So, so enticing.

FearlessMsMimi profile image
FearlessMsMimi

hairbrain4 it’s sad that we have to go through the craziness of driving, paying, and inconveniencing of our loved ones. Talk with MS one to one about co pay and see if they can set up at the location closer to home and have a covering doctor on standby.

hairbrain4 profile image
hairbrain4 in reply to FearlessMsMimi

I had been down that road and the high copay is what they came up with. It was because of the hospital/infusion center not being on contract with the insurance company. I have finally been approved for the extra help from Genentech too. As long as I make the drive to the other hospital I'm covered.

miwido profile image
miwido

Definitely call Genentech and get set up with their program. I didn't have to pay anything on mine. I totally understand the drive. I had to travel 2 hours for mine, but I wanted to be at my neurologist's infusion clinic in case something happened. Maybe see if yours will agree to do the first one there with them and then if you don't have any issues - maybe you can do the second one nearer to your home? You tend to have the most reaction issues during your first 1/2 infusion, then the second one goes a lot smoother - Mine did anyway. Good luck and keep battling!

hairbrain4 profile image
hairbrain4 in reply to miwido

I hate the drive but it is what it is. I'm just grateful that I will now be able to get the infusions and not pay for it with an arm and a leg. My doc will be close if anything does happen (praying it won't) and I'm probably better off there anyway, as I have had solumedrol infusions there before & the staff is great there.

ChrissyScott profile image
ChrissyScott

At an infusion center they have medical personnel so not sure why he would say that.

hairbrain4 profile image
hairbrain4 in reply to ChrissyScott

It's because if anything did happen she wouldn't be able to treat me. I would have to use another doc that doesn't know me etc. or be transferred to the hospital she uses.

Taylorsmom profile image
Taylorsmom

Hi hairbrain4 , I will keep you in my prayers that things work out for you! For the life of me, I don't understand why it's so hard and so expensive to get medicated.

hairbrain4 profile image
hairbrain4 in reply to Taylorsmom

The answer to your question is MONEY. The healthcare system (not including the doctors) doesn't care about the patients, only the bottom line. They have to please their investors in order to keep getting money out of them.

hairbrain4 profile image
hairbrain4

I have good news! First of all thank you everyone for your thoughts, concerns and prayers, they are greatly appreciated.

As long as I go to the infusion center that my doc wants I don't have to pay anything. I knew if I would just give it up to God everything would work out for the best. Ocrevus did approve me on their help plan. It turns out that my insurance doesn't have a contract with the local infusion center which is why the large copay. I trust my neuro, she is one of the best in the area & if she says no to the closer center then I will take her word for it. When you live in rural America like I do sometimes the small hospitals just can't handle the problems that may arise, even though their infusion center has been approved to infuse Ocrevus. So now I am just waiting for a date to be set up.

janetb1968 profile image
janetb1968

Big hugs hun i really don't understand how u cope in the States with insurance and co-pays which is something I'm trying to understand xxx 🙄🙄🙄🙄. It's ur health that's more important!

hairbrain4 profile image
hairbrain4 in reply to janetb1968

Some of us have a hard time coping with the insurance & copays. It used to be easy but for the past few years since "Obama Care" happened it has been a nightmare & more expensive with less coverage. Ugh!

mrsmike9 profile image
mrsmike9

:-(

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