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Drowning in medical bills

How do you all cope with the costs of treatment? My son is on Renflexis infusions, he gets them every two months, and together with the labs, other tests and doctor visits, I'm overwhelmed with medical bills. I took a job in 2017 to get better insurance (although I also took a big pay cut too) hoping to reduce my expenses but it's not helping. My husband and I make too much money to get any assistance but I'm just drowning under these costs right now. Am I doing something wrong? Help!
 

my little penguin

Moderator
Staff member
Remflexis has a copay assistance card
Your sign up through your child’s Gi
All biologics have them
They are not based on income and cut the copay down to $5-40 US dollars
If you are in the US most states have medical assistance secondary insurance for children with chronic illness
These are not based on income
They are based on diagnosis
So your children’s hospital social worker can help you fill out the forms
They can get it processed faster than you as an individual can
This covers all copays and drug costs etc...

If your state does not have this
Talk to the social worker there are other programs that can help

If your in Canada we have parent members there they may know of other options as well
 
Remflexis has a copay assistance card
Your sign up through your child’s Gi
All biologics have them
They are not based on income and cut the copay down to $5-40 US dollars
If you are in the US most states have medical assistance secondary insurance for children with chronic illness
These are not based on income
They are based on diagnosis
So your children’s hospital social worker can help you fill out the forms
They can get it processed faster than you as an individual can
This covers all copays and drug costs etc...

If your state does not have this
Talk to the social worker there are other programs that can help

If your in Canada we have parent members there they may know of other options as well
I'm in the US, but I'm in Alaska where medical costs are outrageous. I don't think it's the medication that's costing so much, it's the infusion center. I'm being charged between $8,000 and $11,000 per infusion depending on the labs requested. My out of pocket for my insurance is $6,000 and after that they're supposed to pay at 100% but the infusion charges are above the "allowed" charges based on Medicaid standards so I'm always charged something. So I have just over $8,000 I owe right now from last year, and we start this year's treatments next month so I'll be starting all over again. We are switching centers so maybe the new one will charge less. But it's just completely overwhelming to me right now. I'll have to try and get more info about the secondary insurance or try to find a social worker. Crazy that they didn't tell me anything about these options. So thank you for this info, I really appreciate it.
 

my little penguin

Moderator
Staff member
Once you reach 100% out of pocket
They shouldn’t be allowed to charge you anything
They agreed to accept the insurance payment as payment in full that is why the infusion center has contracts with insurance companies
Secondary insurance won’t help with that since it only pays what the first insurance doesn’t cover
In this case the agreed upon contract price with the insurance company
If you being charged the difference
Then that is a whole other battle
Check with the new infusion center on what their policy is with regards to contracts with your insurer and payment
Ds always had his at a hospital center
Most are doing infusions at home now with home health
Much cheaper
This is being required by insurance companies
 

my little penguin

Moderator
Staff member
If infusions costs are too high you could talk to your child Gi about switching to injectable like humira where there are no infusion costs
But then you lose a biologic ......
 
If infusions costs are too high you could talk to your child Gi about switching to injectable like humira where there are no infusion costs
But then you lose a biologic ......
We've already tried Humira. My son's only Crohn's symptom is an anal fistula, and the Humira didn't work as well as the Remicade / Renflexis. But yes, there was much less cost involved going that route. My son turns 18 this year so we'll be switching GI docs so maybe we can explore other options with the new doc.
 

my little penguin

Moderator
Staff member
Secondary state insurance only works for kids with chronic illness up to 18
So that won’t help if he is turning 18

mid he needs remicade
Then I would ask about home health
An aide /nurse gives the remicade at home
Much cheaper all around
 

Tesscorm

Moderator
Staff member
I don't have any advice but will tag carolinalaska. Not sure if she'll see the tag but she lived in Alaska in the past and her daughter had treatments there. She may have some knowledge re insurance.
 

crohnsinct

Well-known member
Not to depress you but $6k-$11k for hospital based infusion seems like a bargain to me. Ours started at $25k and are now $46k-$80k (but now my daughter has a special circumstance).

MLP is 100%correct. If the hospital is on your insurance (in their network), then they have a negotiated rate with your insurer and can not charge you the amount above reasonable and customary. I would make an appointment with the hospital social worker right away and maybe they can help resolve that.

Also, try that in home infusions are a fraction of the cost. Mostly because the home infusion agency gets the drug so much cheaper than the hospitals because other volume. My daughters love home infusions. So much less time taken away fro other activities i.e.: school and work not to mention no need to travel to the hospital. Much more comfortable to.

I am sorry you are having to deal with this on top of the stress of managing a chronic disease. Good luck!
 
Not to depress you but $6k-$11k for hospital based infusion seems like a bargain to me. Ours started at $25k and are now $46k-$80k (but now my daughter has a special circumstance).

MLP is 100%correct. If the hospital is on your insurance (in their network), then they have a negotiated rate with your insurer and can not charge you the amount above reasonable and customary. I would make an appointment with the hospital social worker right away and maybe they can help resolve that.

Also, try that in home infusions are a fraction of the cost. Mostly because the home infusion agency gets the drug so much cheaper than the hospitals because other volume. My daughters love home infusions. So much less time taken away fro other activities i.e.: school and work not to mention no need to travel to the hospital. Much more comfortable to.

I am sorry you are having to deal with this on top of the stress of managing a chronic disease. Good luck!
Maybe that's part of our issue. There is only one pediatric infusion center here in Anchorage and it's in an out of network hospital, but we did get a waiver from the other infusion center in town because they don't do kids. The whole insurance situation is so confusing to me, and I guess I should be glad the cost of our infusions aren't more. But there's no way we will survive financially if I incur medical expenses like this year after year. I guess there could be a bright spot, since I had no idea about home infusions. I have no clue if that's an option up here but I'm definitely going to check into it! So thanks!
 

Maya142

Moderator
Staff member
My kiddo does home infusions and LOVES them. It's also a lot cheaper for the insurance provider, so hopefully they will allow it!
 
So sorry to hear about all you're having to deal with. Even if you can't get home infusions, maybe things will be better when your son turns 18 and can use the in-network infusion center? I also agree that it's strange that you're being charged extra for the out of network infusion, when that is the only option that you have.

My daughter got her infusions out of network at a children's hospital until she was 13, but our insurance did have an agreement with that hospital, and we were not charged any extra out of pocket for going there. Ever since she turned 13, she's been able to go to an in-network clinic for her infusions. Our costs are still the same, but the cost to our insurance is much less now. Looking at one of our EOB's from an infusion last year, the cost of the infliximab was $8200, but the cost of infusion services was just $556 and another $80 for labs. I can't imagine that home infusion would be less expensive than that.
 
I appreciate everyone's advice so far, truly. I still don't know what the answer is for us personally. It's the out of pocket cost of my insurance plan, (which I thought was good) which is $6,000. Financially I can afford $100/month, which means it would take me 60 months to pay off last year's charges. I must be doing something wrong here. I'll never get out of the hole at that rate...
 

my little penguin

Moderator
Staff member
When you use out of network you are responsible for the difference that your insurance doesn’t pay
Even if you max out
In network they have an agreement with your insurance and you don’t pay more than your out of pocket max and cover 100% once you reach out of pocket max
You need an in network infusion clinic or home health nurses in network
 

crohnsinct

Well-known member
Even if the pediatric center is out of network, your insurance should cover it as they have no other options for you. In this case, you would pay up until you meet your deductible, then your co pay amount and then after you max out you pay nothing. Have you called the drug company to see if they have a plan that helps pay for the drug. Most of the biologic companies do and they are not income based. Pretty much everyone with private insurance gets a card.

Beyond that, what I can tell you is that a lot of hospitals will let you set up a payment plan and then after a number of months will offer to write down the debt. Hang in there and try talking to the social worker at the hospital.
 
Even if the pediatric center is out of network, your insurance should cover it as they have no other options for you. In this case, you would pay up until you meet your deductible, then your co pay amount and then after you max out you pay nothing. Have you called the drug company to see if they have a plan that helps pay for the drug. Most of the biologic companies do and they are not income based. Pretty much everyone with private insurance gets a card.

Beyond that, what I can tell you is that a lot of hospitals will let you set up a payment plan and then after a number of months will offer to write down the debt. Hang in there and try talking to the social worker at the hospital.
This is correct. I had a similar issue happen to me with a specialty doctor I needed to see. Insurance Companies are required to offer you an in-network option within a certain mile radius. If not than you can petition them to accept the out-of-network hospital for an in-network price.

Additionally, if you are not on state sponsored insurance (i.e. private insurance with your work) than most pharmaceutical companies have a savings card/coupon to help lower the cost.

I have been using my Humira card for over 2 years. It only charges me $5.00 per prescription. Otherwise my cost is $300.00 a prescription.

Another thing to look into is your prescription benefits cost. Most insurances offer a separate deductible and out of pocket maximum. For instance mine is $100 deductible and $1150 co-insurance after that my insurance pays 100% for all prescriptions no matter the cost.

I am not sure how infusions work as I know you need to go to the hospital but it might be worth looking into to see if the price of the drug can be reduced.
 
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