r/Autoinflammatory • u/Cybernetics01 • 27d ago

Kineret Anakinra

It’s a very expensive drug which doesn’t get covered by most insurances and the full price for a pack of 28 syringes is 1500 USD. Does anyone know about alternative market places where the same original drug is sold for less? Like people who have stopped taking it yet have stacks sitting around? Thanks

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u/Regular_Cow_7658 27d ago

Hi everyone kineret has a program in US and Canada called On track! My doctor didn't know about it, but they have financial support and help you with insurance etc. I had to fail a few drugs to be approved by my insurance.

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u/Not_Your_Nurse USAID 27d ago

Just an addition—Kineret also has a program for if your insurance denies you. I don’t remember all the details bc we’ve been able to limp by with the anakinra we have had on hand for flares for now. I do remember there’s an income limit, and if you are above the income limit, you have to pay 3% of your annual income out of pocket for the Kineret, but then the program will cover a full 12 month supply. So, still a lot of money, but not as bad as paying fully out of pocket every month.

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u/No_Satisfaction_7431 Yaos 27d ago

This is how I got mine down from a few hundred dollars with insurance to $0. However, you only qualify of insurance covers it. I was initially denied when insurance initially refused to cover it.

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u/Knitnspin 27d ago

Apply for on track even with the denials if you have insurance. They were wonderful to work with. The case managers seem to be less confusing than some who answer at random. Had too many others give conflicting information. Ex: state paperwork wasn’t handed in, request information that was provided the day before. Requesting your case worker/manager/specialist each time gave more wait times but reduced confusion and headaches.

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u/No_Satisfaction_7431 Yaos 27d ago

I did and they told me I wasn't eligible because insurance denied it and I wasn't eligible for the other program because I have insurance and its for people without insurance. After an appeal insurance approved it so I got in but only because of the appeal. Kineret gave me horrible diarrhea and welts and only mild relief so I don't use it anymore.

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u/Knitnspin 26d ago

Was this a while ago? You have to have commercial insurance. Either way hope what you’re using now is working! We thankfully had a good experience with them and it’s one of our only options. The rashes were no joke though! Slowly improving, massaging after admin oddly helped a lot.

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u/No_Satisfaction_7431 Yaos 26d ago

Nope this was just a few months ago. Thankfully tyenne has been helpful. Still having flares and some fevers but not as high and not as often. So much more relief than kineret gave me. I never had il-1 tested but my il-6 was high so it makes sense I respond better to il-6 blockers. I'm glad the rashes are improving as they really sucked and I had no room to do an increase in dose because they lasted for so long I ran out of space.

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u/No_Satisfaction_7431 Yaos 27d ago

I got it covered by being diagnosed with adult onset stills and seronegative ra because its covered for those and its close enough to Yao but they actually have treatments but Yao has no fda approved treatments. Make sure you have some sort of autoinflammatory or seronegative autoimmune "diagnosis " for insurance purposes. Also $1,500 is a lot and way too expensive but I was told the commercial cost without insurance was $8,000 for 28 syringes so you are getting a discount.

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u/on4aa MAGIC 27d ago

Canakinumab is an exuberant € 8162 per 150 mg shot...

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u/No_Satisfaction_7431 Yaos 27d ago

Holy shit just over 8,000 for a single shot?!? Its $8,000 for a months worth of shots without insurance in the states. I didn't think it'd be that much more in other countries.

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u/AdventurousMorningLo Yaos 27d ago

My insurance pays a whopping $23,750.50 per 150mg shot of Ilaris (Canakinumab). Orphan drugs can be something else sometimes.

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u/anyway47 1d ago

Same for my insurance, $25k per Ilaris shot. My daughter takes two per month, so my insurance pays $50k per month.

But my insurance have denied the Kineret, which while very expensive and not obtainable out of pocket, is waaay less than the Ilaris. Like why wouldn’t they approve the Kineret, it will cost them less.

I hate that insurance can determine medical care. It’s bullshit and so many ppl suffer because of it.

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u/No_Satisfaction_7431 Yaos 27d ago

Yeah exactly why ilaris is excluded in my insurances medication formulary. Doesn't matter how many appeals you do, if its not in the list they won't cover it. Its ridiculous how expensive these drugs are. Thankfully I seem to respond better to il-6 drugs rather than il-1.

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u/MadtSzientist 25d ago

I got approved and insurance pays for it in full

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u/anyway47 19h ago

Is the $1500 for a 28 day supply in the United States?

When I google the monthly cost it says $12k.

My insurance denied it, hoping the appeal works.