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A MGteam Member asked a question 💭
Clarkdale, AZ

I've undergone a round of four Vyvgart infusions, which incidentally did not help my MG symptoms at all. Why does each infusion have to cost nearly $44,000? That's insane! I now have a hospital bill for the staggering amount of $173,248.34 for my infusions. No one ever said one word to me about the cost of the medication, the fact that I may have a copay or that my insurance may not accept this. I have good insurance, but they paid only $12,000 out of a total bill of $186,000. THE BALANCE… read more

December 11, 2025 (edited)
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Answer Summary

Members rallied around someone facing a devastating $173,248 hospital bill for Vyvgart infusions that didn't improve their symptoms, with many... Read more

Members rallied around someone facing a devastating $173,248 hospital bill for Vyvgart infusions that didn't improve their symptoms, with many shocked by the lack of upfront communication about costs or insurance requirements. Several members shared critical advice, including contacting Vyvgart's patient assistance program (which can cover up to $25,000 annually), appealing insurance denials, ensuring proper coding, and working with nurse advocates or the drug manufacturer's liaison to navigate financial options. A recurring theme was frustration with the broken healthcare system and the hidden costs of rare disease treatment, balanced by stories of hope from members who eventually saw improvement after several months and paid little to nothing through assistance programs.

A MGteam Member

I left on guard and the girls in my neurologist office worked with them and I pay nothing of the balance. The insurance companies to me are so crooked how they work I don’t understand it.
Don’t give up there’s plenty of different programs where they pick up the rest if your company doesn’t pay for it. Right now I’m having trouble with Medicare and are they going to pay for the new Imaavy im on. I find out when you’re on infusions insurance companies, and doctors office give you. It’s little information as possible. You have to do a lot of footwork unfortunately.
I would go to the manufacturer of the medication and ask for their medical liaison and they usually work with you. I’m told right now I could possibly get a two year grant for this new medicine, but I’m still waiting.
Unfortunately, this disease is fairly rare, and the infusions are fairly new. Not that many people you talk to at the insurance level understand it. Be persistent and I wish you all the luck in the world.
If there’s a lot of mistakes, I’m having some trouble speaking into the computer not a good day for me.

January 11
A MGteam Member

Hey DianeGregg
I hope you do well with your infusions. I've never had them.
I'm so sorry you have to be so concerned about paying for it.
Praying you do well and you come out feeling energized
But really,
Take it easy okay its not magic
Stay hopeful 😎

January 10
A MGteam Member

The healthcare system in the United States is broken for such a strong country and powerful country they don’t do right with our healthcare nor do they do right with our veterans either but that’s another story I’m getting my first IV infusion in the home it’s a big blast I feel more comfortable being here I have to pay $2100 for it I’m hoping it helps for my weakness all my other symptoms seem to be fine so if it works it’ll be definitely worth the 2100 and I’ll have to do a payment plan hopefully with free financing afterwards I will then start going to an outpatient Facility or maybe my hematologist can do it in his office. This one is supposed to be between four and six hours I would feel definitely more comfortable at home. I’m scheduled to have it Wednesday and Thursday. Wish me luck.

January 10
A MGteam Member

I´m in Sweden, and I´m so grateful for everything we get in return from our taxes. It makes you feel safe and cared for and the care is top of the line. It´s like an insurance for everybody. What you pay are taxes too really, only with another name, unbelievable expensive and it doesn´t hit you until you get sick. And then you´re on your own. But sooner or later everybody gets sick! I wish you´ll get the same system, health care no matter if you have money or not.

January 7
A MGteam Member

I was very fortunate that I never paid a penny for my infusions. My insurance company paid well and I know the company that creates Vivgart paid whatever was remaining. Now I do the injections and again I don't pay a penny for it because my insurance and the company pick up everything. You may want to check with the viveguard company and see if they will pick up at least some of it for you. I believe I was told they will pay up to $24,000 a year?

January 11

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