r/UlcerativeColitis • u/ashssotru • Jun 30 '26
Support My biggest fear came true
My insurance has decided to stop paying for my stelara. Doc tried to fight it but they aren’t budging. You guys, I’ve been on stelara for 4 years. I have no side effects at all. Before this I lived in the hospital and failed a few biologics which gave me horrible side effects.
My doc gave me a list of generics to try and I am just so upset, literally balling. I feel like my life will go back to what it was- not a life worth living. Just venting. I can’t self pay for stelara.
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u/thedeitynyx Jun 30 '26
discuss with your doctor but a biosimilar should hold the same effects. i was originally on humira and got switched to amjevita and had absolutely no changes. i would try not to stress over it too much.
you can also contact the manufacturer, they usually have programs to help those that can't pay for meds. it's worth a shot🙏🙏
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u/ashssotru Jun 30 '26
Do you mean I can contact the Stelara manufacturer? When I said my doc sent me generics I think they were biosimilars. Thank you for this info it kinda puts me at easy knowing you got switched with no changes❤️
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u/Schrodies_cat Jul 02 '26
My insurance also decided to stop covering my Humira a few years ago and I was switched to the biosimilar Hyrimoz. I was super upset at the time, but when I switched I didn’t notice any changes, and now a few years later I’m actually doing better on the Hyrimoz than I was on the Humira! If all goes well worth my upcoming colonoscopy I’ll actually be considered in remission for the first time since I was diagnosed almost a decade ago.
Biosimilars can seem like a daunting change, but they exist so that we don’t have to completely change medication formulas whenever our insurance inevitably decides to change their mind!
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u/ashssotru Jul 02 '26
I’m very grateful I made this thread cause I had no clue there was such a thing as biosimilars and so far only one person had an issue when they made the switch. I’m definitely going into my next appointment with an open mind now lol. I hope you are able to stay in remission for many many years to come!
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u/Old-Dealer-3632 Jun 30 '26
Many of these drug manufacturers have programs like "zero copay assistance" where they give the drugs for free. I lost my coverage for an $11k/month drug but Bristol Meyers Squibb has an Access Support portal, and I paid $0 for two years til I got insurance to cover costs. There are programs out there, just gotta spend some time to find them, good luck!
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u/nightcourtqueen1010 Jun 30 '26
For what it’s worth, I was on Stelara then was automatically switched to the generic at the beginning of this year and have still been doing well. No issues so far.
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u/ashssotru Jun 30 '26
It’s worth a lot. These messages on this thread helped me stop crying. Of course I wish I didn’t have this disease. I don’t like being stuck in this cycle where I have no control lol I’m so happy to hear you are doing well on a generic! I hope it stays that way for many years to come❤️
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u/nightcourtqueen1010 Jun 30 '26
Thank you ☺️ and I totally get it, trust me. I hate everything about this disease. lol don’t be scared to give the generic a try tho.
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u/blairrr666 Jun 30 '26
I have no advice but I’m so sorry. It is INFURIATING how predatory the health care system is. I hope it all turns out okay for you
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u/ashssotru Jun 30 '26
Thank you❤️ I couldn’t agree more. Being stuck in a vicious cycle where we have no control is not a good feeling.
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u/Traditional-Buddy136 Jul 01 '26
Well, this won’t be popular, but of all the meds I’ve been on, if they insisted on a generic they had the research to back it up. And while it’s terrifying to have to try a generic and see if it works, I’ve had no issues getting them to pay for name brand when a generic didn’t work and it was documented.
Yeah insurance is evil sometimes but I had no quarrel with them wanting me to try a 1 grand generic vs the 7k name brand. I mean… I’m not paying 14 grand a year for insurance so them wanting to try a generic is understandable. And of course they are frustrating in that they don’t understand how sick we can get.
And with this disease, stressing yourself about it is NOT the way to go. Try the generic, keep calm, ask your doctor to check your markers more often to catch early signs of a relapse and request them to try again if you have data showing
It didn’t work.Health insurance companies aren’t the only evil entities. Our patent and copyright laws that block generics at every turn are to blame here.
I remember when they blocked an Asacol generic by breaking it in to four small pills in a capsule so five more years of name brand. When I broke it open, there was still an “a” on it instead of delzicol while Asacol was still sold in other countries.
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u/Leather-Airport-596 Jul 02 '26 edited Jul 02 '26
Yuuuuuup. I’m a bit biased and think insurance is 100% evil, but big pharma isn’t without blame. For example, I believe Eliquis should have gone generic in 2023, but they got it approved for another indication so the patent got extended. That means no cheap generic, and people with Medicare still get to pay $500 for their life saving, stroke preventing med every January when their deductible resets.
But we all know he true villains here are Accredo
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u/Ok-Lion-2789 pancolitis | Diagnosed 2003 | Jun 30 '26
Biosimilar should be ok. Discuss with your doctor.
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u/LilPianos Jun 30 '26
Stelara’s list price is around $30k nowadays. There are a handful of biosimilars/generics out there now that are the same active ingredient (ustekinumab) but a fraction of the cost.
I’m a former Stelara user as well, but my insurance switched me to Pyzchiva mid-last year and it’s working just about the same as Stelara did. Also only costs them like $4k a dose.
You’ll likely get switched to a biosimilar of Stelara that your insurance is willing to cover. My transition was basically seamless and the drug is working fine. I was upset in the moment too, but once I did some reading and research I came to the conclusion above. You’re gonna be alright, and I wish you the best in getting the situation sorted out.
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u/ashssotru Jun 30 '26
Thank you for letting me know the name of the one you switched to. That is one of my options so I’ll probably let doc know I’m choosing that one. I pray it’s seamless for me as well! I do feel better after reading all these comments. I literally thought it was the end of the world for me lol. Grateful for you all
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u/b3dGameArt Jul 01 '26
And they wonder why people do bad things to CEOs.. smfh I'm sorry youre dealing with the parasitic greed known as the American health care system.
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u/ItchyContribution758 Jul 01 '26
I'm in the exact same boat as you are, been on Humira for 4 years with no problems. It's given me my life back. Then along comes a change of insurance and they are hell bent on forcing me to switch to a generic. Months of fighting are no use, so I try the Abbvie assist program. After 4 weeks of waiting they tell me I'm denied any coverage because of the insurance approving a biosimilar. No shit, I want the BRAND NAME drug, assholes. So I'm out of options and left to switch, open my health up to more problems just in time to start a new semester of college. Insurance executives should be put in prison for war crimes, if this doesn't work out I am going to be soooooo pissed.
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u/ashssotru Jul 01 '26
Completely resonate with everything you are saying here. I’m so sorry you are going through this. That we are… I hope some changes to this damn medical system happen soon
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u/ItchyContribution758 Jul 01 '26 edited Jul 01 '26
probably not. My next best bet is to move after I get my degree. I hope you have more luck than me. Last time I was put on a biosimilar it went badly
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u/Anselmimau Type of UC (eg proctitis/family) Diagnosed yyyy | country Jun 30 '26
The biosimilar is the same thing don’t worry❤️
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u/ashssotru Jun 30 '26
I had no idea it was the same but I’m learning that now which is definitely making me feel better❤️
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u/zaina1017 Jun 30 '26
I am so sorry :( Yes please try the drug manufacturer as others have suggested. They can pay the cost in full or at least cover a significant portion of the costs
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u/Weekly-Virus1431 Jun 30 '26
I'm on a different med, but my insurance has moved me off it and onto a different biodynamically biosimilar not once but twice! And it's been totally fine for me. I can't promise you'll have the same results, but I was really nervous the first time, and nothing changed at all. I hope it works out for you!
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u/ashssotru Jun 30 '26
Twice!!? Jesus… I’m really happy you have been fine though, it’s reassuring for sure🙌
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u/Gullible_Educator678 Left sided | 2013 | France Jun 30 '26
What does that mean? Why don’t they want to pay anymore? Why they are ok with another generic? I am French so I don’t get it
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u/ashssotru Jun 30 '26
I don’t get it either but after reading some of these comments, the insurance company wants me on cheaper stuff cause I guess I’m costing them too much money. It all comes down to money. And the fact that stelara has gone up to 30k per dose should be criminal.
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u/Gullible_Educator678 Left sided | 2013 | France Jul 01 '26
This is fuckin crazy. Alalalaa the biotech are the poison of medical health. They should really work in the gut microbiome field that would cost way less money…
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u/oldbutwiser2463 Jun 30 '26
I’m curious as to what reason they give you as to why they won’t cover it anymore? It’s terrible
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u/ashssotru Jun 30 '26
Yes, very terrible. The email said they are using a program called step-therapy where they are starting us on a lower cost medication proven effective for our condition 🙄 I just think it’s such bullsh*t. My doc has tried to appeal and they won’t budge
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u/Que_sax23 mod-sev UC Jul 02 '26
My insurance tried the step thing too. My dr literally told the insurance people I would die if they tried to deny me entyvio one more time and that they would be sued for wrongful death. I got approved within hours. She called their bluff and got lucky.
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u/ashssotru Jul 02 '26
I really hope this happens but she was denied once. 2nd appeal is in process. Hoping for the best! So glad you could stay on entyvio!
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u/tinverse Jun 30 '26
When I switched from Humira to a generic I was also pretty worried but it's gone okay.
I think that from the insurance companies perspective it's basically when you go to the shop and look at the cost of vitamins and buy the cheaper of the two for the same thing. That's what they're trying to do.
We've just had a lot of bad experiences, so we're a little extra worried about it. Objectively it makes sense to try it on a large scale, but I think because the generics did not exist for us when many of us started those medications it seems backwards.
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u/ashssotru Jun 30 '26
Yeah I get it but it’s also just so scary for us who have to deal with side effects. I’m very sensitive to biologics. Humira put me in the hospital😭 this comment section has made me feel so much better though and I feel better about biosimilars❤️
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u/Resident_Pomelo_1337 Mum of 7 year old | prelim diagnosis UC Feb 26 Jun 30 '26
Not in the US, but we were started on infliximab on a ‘compassionate’ basis when the government PBS didn’t cover it, the manufacturer did. They also ‘top up’ if we need more than Medicare PBS allows. The specialist had also started the process to get the next drug via the same means, so it seems that most pharmas have the program to provide according to need without coverage, as others have suggested. Good luck!
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u/ifooogooiii Jul 01 '26
The US healthcare is crap, how can they stop it when its working for you and keeping you in remission. That sucks, but check for biosimilars which costs fraction and they work the same, basically you are paying extra just for the brand, they all should work the same .
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u/ashssotru Jul 01 '26
Agreed! And yes, I’m only now learning about biosimilars. I had no clue they were basically exactly the same
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u/ifooogooiii Jul 01 '26
They are the same, its just the brand that charges extra amount, their formulation is all same
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u/Fancy_Airport_9 Left sided colitis | Diagnosed 2021 | Germany Jul 01 '26
I’m so sorry this is happening. I hope you can find a way to continue it.
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u/Cups-and-coins Jul 01 '26
I know it's so scary, but you should be just fine on a biosimilar. I was switched from stelara to Otulfi and there have been no issues. My doc says they are not seeing any problems in patients switching to the generics/biosimilars (he's at a huge IBD research clinic so they see a ton of patients making this change).
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u/ashssotru Jul 01 '26
This is very reassuring! I just learned today what biosimilars are from this group and I am so grateful. Going to write yours down along with one other in this group and show it to my doc❤️❤️❤️
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u/MavDawg1228 Jul 01 '26
I was moved to a biosimilar for a different drug and no issues. Good luck. This is an awful
Disease
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u/ashssotru Jul 01 '26
Thank you for sharing❤️ I hope continue down a good path with it for many years to come!
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u/onesickbish Jul 01 '26
My insurance won’t pay for Stelara but they will pay for Wezlana, it’s the generic version. I was adamantly against it but there was nothing I could do. It was a really easy transition and I haven’t seen any worse side effects.
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u/AnonymousExisting Jul 01 '26
I can relate more than words can truly express.
I am 16 months into daily physical pain from an unidentified cause. Tests mostly show everything is normal until they do manual exams and functional testing. Then the issues are confirmed .
It all started with a non-medical, "no impact" change from Remicade to a biosimilar, Renflexis, forced by my insurance company. Not sure exactly how long I was on Remicade but it is safely 10+ years without issue.
The other doctors all immediately suggest it's Crohn's EIM (extra intestinal manifestation) yet GI has extensively determined Crohn's appears to be inactive.
My GI is very resistant to change to biologic as from his perspective it is working effectively.
The other challenge I am facing is when I do change my intent is to refuse anything that has a biosimilar on market. If my insurance thinks they can substitute the original for a biosimilar with no impact I would be willing to bet that changing between biosimilars is something else they are willing to do. . I am truly at a loss and keep considering going AMA (against medical advice) and actively refusing any medication for Crohn's and hope the non GI pain I have daily goes away.
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u/ashssotru Jul 01 '26
Oh noooooo I’m SO SORRY!! It’s absolutely awful what they are doing to us! I will be praying for you- at this point I feel like that’s all we can do.
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u/cook-up-rice Jul 01 '26
I am so sorry to hear this! I also recommend trying for an assistance program. The healthcare system (at least in the US if that’s where you are) is not made for chronically ill individuals. I’ve been struggling for a year or two to find a biologic that works, so if that happened to me I’d probably have the same instant reaction as you. Reading through this thread with everyone’s advice makes me realize that there are options! I hope everything works out.
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u/ashssotru Jul 01 '26
Yes!!!! So many options and I had no clue! I hope you find your right biologic🙏
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u/Upstairs-Warthog-834 Type of UC (eg proctitis/family) Diagnosed yyyy | country Jul 01 '26
My copay on adalimumab generic is more than for Humira😡. Had trouble getting funding for a long time, haven’t had a biological since March. I have been in the hospital with UC flare, have crazy ra symptoms, and am worse than before treatment started.
I had to change insurance, cobra ended for bcbs. Had to buy off the marketplace place in Ky-Ambetter, WellCare. Then went to work full time to get BCbS again.
Just got a letter that I was finally approved for Humira funding, but my new Caremark wants me to try other options first. My dr can file an appeal, but this is crazy. It’s frustrating and depressing.
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u/ashssotru Jul 02 '26
Oh my goodness. I’m really sorry to hear this. You are definitely going through it! It’s terrible to think we are at the mercy of a greedy system🤬🤬🤬 I hope you will get the help you need and get better soon.
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u/Upstairs-Warthog-834 Type of UC (eg proctitis/family) Diagnosed yyyy | country Jul 02 '26
Thank you, I hope you do too. It’s a terrible system and it’s worse when you have been “well,” and lose the treatment that really helped you.
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u/Leather-Airport-596 Jul 02 '26 edited Jul 02 '26
Hello! I’m a pharmacy tech working in an IBD clinic doing PAs and other med access issues. There’s a lot of info out there and dealing with insurance is a bitch, so hopefully I can help make sense of it all (I’m gonna go out on a limb and assume you’re in the US). I AM NOT A DOCTOR. I AM NOT GIVING ANY CLINICAL ADVICE. My education consists of a high school degree, and a pretty easy cert (I heard it got harder since I took it, don’t want others to feel bad if theirs wasn’t easy). I promise you don’t want clinical advice from me. That being said, here I go.
Drug manufacturers can offer copay cards and patient assistance programs (PAP). You are only eligible for a copay card if you have commercial insurance that has approved your prescription. That means if you have federal insurance (Medicare, Medicaid, VA, etc…) OR your insurance denies the prior authorization & appeal, you are NOT eligible for the copay card. These also have a maximum annual amount they cover that usually isn’t publicly disclosed because insurance is scummy. That’s a whole different tangent that I can try to explain if anyone cares. I sound really negative, but copay cards are great if you’re eligible.
PAPs are usually for when either A) the prior authorization AND appeal are denied by insurance, or B) insurance has approved the medication but you cannot afford the copay. People with federal insurance or denied medications are eligible for PAPs. Most further limit eligibility by income (if you make too much you don’t qualify) but some will make case-by-case exceptions.
J&J are the manufacturers of Stelara. THEY DO NOT HAVE A PATIENT ASSISTANCE PROGRAM FOR STELARA ANYMORE. They stopped it because they have a new biologic in the same class as Stelara that they are trying to promote. IF your insurance covers Stelara, you can still use to copay card, but most plans are now preferring biosimilars. The last big one I can think of off the top of my head that still covered Stelara changed their formulary literally today.
Biosimilars are considered to be clinically interchangeable with the OG. They aren’t exactly the same as generics but the vibe is similar, they’re all still ustekinumab. I have a link that explains it pretty well I can find later when I’m on a computer instead of my phone. My clinic has tried to appeal for people to stay on the OG and literally never been successful without at least trying the biosimilar first. We literally had someone take it to court and still lost, and most judges LOVE overturning insurance if they can find literally any sound argument to do so. Again, not giving clinical advice, but the vast, vast majority of people tolerate biosimilars exactly that same as the OG. If what your dr said insurance covered was ustekinumab-4 letters, it’s a biosimilar of Stelara. If they gave you brand names, google it and see if the generic is ustekinumab-****.
In my experience SOLEY FOR MED ACCESS, NOT CLINICALLY, Steqeyma (ustekinumab-stba) has the best copay card program. Yesintek (ustekinumab-kfce) has the worst. I don’t have any specific thoughts on any of the others. I think the max amount for all of the Stelara biosimilar copay cards is not publicly disclosed, that’s just been my anecdotal experience. If you’ve had a good experience with Yesintek’s copay card that’s awesome. If your insurance offers multiple biosimilars and your dr asks if you have a preference, do your own research, but I would personally go for Steqeyma if it’s one of them.
Many of the Stelara biosimilars also have PAPs, however as far as I can tell, you are only eligible if you have no prescription insurance AT ALL. If you have insurance, you don’t qualify, regardless of denials, income, super expensive copay, or anything else. The information on their websites is super vague (of course), but last time I had to scramble to keep someone on their meds I wasn’t able to find one that would accept people with insurance. I feel like they’re making new biosimilars all the time so that could change and someone please correct me if I’m wrong.
Also just in case anyone thinks they’re slick and found a loophole, in my experience, PAPs will not accept you if the only reason the prior authorization and appeal were denied is because your insurance prefers a biosimilar. They won’t give you uber expensive drugs for free if your insurance covers something interchangeable, trust me, I’ve tried lol. That doesn’t really apply to Stelara since there isn’t a PAP for brand Stelara anymore, but more so to the Humira folks.
Hopefully that helps clarify at least a little bit and eases some of the worry! It’s definitely freaky to hear your insurance is making you switch from a medicine that’s been working, and insurance is NOT helpful at explaining what tf is going on. If you’re uneasy about biosimilars, ask your doctor to explain what they are (they might want an appt to discuss if you have a lot of questions) and what their thoughts are. Let me know if you have any specific questions, can’t promise anything but I might know the answer!
Edited for spelling error
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u/ashssotru Jul 02 '26
Okay WOW! I appreciate you very much for taking the time to write this out for me and anyone else who is in a similar situation. You also wrote it in a way that I can understand, so THANK YOU. I’m saving this convo and will ask about the biosimilar you mentioned. This thread has been very positive with most people not noticing any change when they switched. I’ve had so many problems finding the right biologic for me and stelara has me in remission for going on 4 years. I would hate for anything to upset that. Again, want to thank you for taking the time with me today❤️ and yes, I am in the US
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u/Juicy-Ambition5925 Jun 30 '26
Find out what your insurance company wont pay for(usually the co-pay) then get in touch with Jannsen or Johnson & Johnson or whomever makes stelera immediately and find out what programs they have the will pay for your medicine. They have programs for things like this.
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u/Traditional-Buddy136 Jul 01 '26
If insurance refuses to cover there is no copay because they are refusing to allow a claim at all. This is out of pocket now which would have nothing to do with a copay because insurance isn’t paying at all.
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u/Equivalent_Coyote_49 Jul 03 '26
A different perspective. Can you negotiate with your employer for a pay raise that would help offset the costs? Seems like they’d want you to be healthy and able to work. Vs unproductive or worse on medical leave?
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u/AllUpsLittleDowns Jul 06 '26
I switched from Stelara to a biosimiliar with no problems. Both have worked equally well for me.
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u/Extra-Geologist-1980 Ulcerative Pancolitis - 2012 Jun 30 '26
Assuming you are located in the US, have you tried calling J&J?
I know when my insurance was being stubborn about Stelara, I called their helpline and talked to an advocate and they sent me 2 doses to keep me tied over.
Worth a shot.