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Medicare Coverage for Stelara

Scipio

Well-known member
Location
San Diego
Has anyone found a Medicare Advantage or Part D plan that provides good coverage for Stelara?

The drug so far is working well for me, so I would rather not switch. And I'm currently employed and on the Janssen CarePath coverage, which is great -- only a $5 co-pay per dose. But looking ahead I'd like to retire in the next year or two so I'm starting to shop Medicare plans. And Medicare insurance is not eligible for the CarePath program.

So far a cursory search has shown me that more than half of the companies out there don't cover Stelara at all. And the ones I've found that do cover it only partially, and thus they require a hefty co-pay. I recognize that I will have to pay more than $5 per dose out of pocket, but I'm hoping not to pay thousands per dose. So if anyone has found a Medicare drug coverage plan that does a decent job of covering Stelara expenses please post it up.

Thank you.
 

my little penguin

Moderator
Staff member
Look at the “doughnut clause” the range you pay more
It’s where you pay more out of pocket until you hit catostrophic value
Then no copay afterwards
What the “doughnut value “ is as well as the catostrophic value can really impact your copay
This starts over every single year unfortunately

You may want to look at medical assistance
Under ssi
Most Crohns patients qualify and then medical assistance does cover all of Stelara
As well as other critical things for Crohns patients


Ds is only 14 so no help on which Medicare covers Stelara
But medical assistance does cover Stelara
 
I also am trying to understand what if any medicare coverage exists for Stelara. I'm 62, so I'll need to figure this all out over the next couple years. As far as I can tell, the medicare advantage and part D drug coverage plans offered by the company I retired from, does not cover Stelara. Gulp...
Not sure but I think biologic treatments administered by infusion are covered by Medicare Part B.
I'l be following this thread with great interest and will post anything I learn.
 

Scipio

Well-known member
Location
San Diego
Looking around on the Medicare.gov and insurance company websites. It looks like you can get Medicare coverage for Stelara on more than a dozen different plans here in the San Diego area. The cheapest is Kaiser for a about $6K/year for the full insurance package, but of course you have to go to Kaiser doctors, which for me would involving switching doctors.

The most expensive ones run about $12K/year with about $10K of that being for the Stelara and the other $2K for the rest of your Medicare insurance. The middle of the road plans run about $9K - $10K/year with about $8K of that being for the Stelara.

Stelara is a pretty good drug, but even with insurance it sure ain't cheap.
 

Scipio

Well-known member
Location
San Diego
Also, all of the Medicare plans I was able to find that would cover Stelara are HMOs. If you had your heart set on a PPO you are out of luck, at least in the San Diego area. Not sure about other parts of the country.
 
We aren't experts in Medicare by any means. My wife uses Stelara and could not find a medicare part D plan that would cover it.

I hope that you have better luck.
 

my little penguin

Moderator
Staff member
Each state is different but when Medicare doesn’t cover a drug
If you call the state they can tell you what “extra plans” they offer - different cards that are made to cover drugs for older adults
 
Looking around on the Medicare.gov and insurance company websites. It looks like you can get Medicare coverage for Stelara on more than a dozen different plans here in the San Diego area. The cheapest is Kaiser for a about $6K/year for the full insurance package, but of course you have to go to Kaiser doctors, which for me would involving switching doctors.

The most expensive ones run about $12K/year with about $10K of that being for the Stelara and the other $2K for the rest of your Medicare insurance. The middle of the road plans run about $9K - $10K/year with about $8K of that being for the Stelara.

Stelara is a pretty good drug, but even with insurance it sure ain't cheap.
Tricare does, but unless you or your spouse is military I guess that doesn't help. I'm going from Vedo to Stelara next month so praying this one works without horrible side effects like I had from Remicade and Vedolizumab. Love your picture. Was in Rome last year, almost died from heat in the Colosseum and that was in April, well maybe beginning of May. Wouldn't you would have loved that communal toilet the tour guide showed us that was there that was a funny story. A picture of it in the link below and some of the intel the guide gave us that day. Take care.

https://www.sapiens.org/column/curiosities/ancient-roman-bathrooms/
 

Scipio

Well-known member
Location
San Diego
Yes, I love Italy in general and Rome in particular. Italy is my favorite European country. I have visited about 5 or 6 times (and I saw the public toilets).
 
I am on Medicare and also have United Health care plan. My plan covers Stelara but copay is $3,326. I applied for help thru Johnson and Johnson but have not heard back yet. What I do know is that J&J financial help only helps with the injections but not the loading dose by IV infusion.

Is there someone else on Medicare and how did you manage the loading dose cost? I know the infusion center is covered by insurance but is there help out there for the cost of the loading dose?
 

my little penguin

Moderator
Staff member
So loading dose is an infusion so that falls under the medical side of insurance …
No different than if your inpatient / outpatient and having a procedure done
The Stelara med given by iv is just part of the infusion procedure being done as well as Benadryl/solumedrol if given during the procedure
So talk to the medical side of insurance

Completely different than injections which go through the prescription side of things
 

Scipio

Well-known member
Location
San Diego
As My Little Penguin points out, the loading dose infusion is a medical procedure and thus is covered under your medical plan and not under your prescription drug plan. When I got my loading dose there was no separate charge for the drug that was infused. It was all rolled into the fee for the medical infusion procedure.

Since your post-loading injections have been approved, it looks like your GI has submiited a pre-authorization for the maintenance doses of drug under your drug plan. Has s/he also submitted a pre-authorization for the infusion procedure? If not, that's what needs to happen next.
 

my little penguin

Moderator
Staff member
It depends on if you need a prior authorization…
My insurance does not require a prior authorization for infusion meds IF the drug being used has been fda approved for the dx code entered by the Gi

That said most insurance companies require prior authorization.
The back of your insurance card or the website should have the number for the prior authorization to be faxed to
 
So, I finally made 65 years old May 2021. My insurance was such that both the initial dose administered by infusion and the maintenance doses administered by subcutaneous injection were covered by my medical plan vs my drug plan. This was the case with the commercial plan I had prior to turning 65 and the Medicare Advantage Plan I enrolled in after turning 65.

That all changed October 15 when Medicare added Stelara to the "self administered drug" exclusion list. My existing drug plan, which is not part D, does not cover injectable medications. So currently, I no longer have coverage for Stelara. My provider was kind enough to turn-over a sample provided to them by a pharmaceutical company to get me through the end of the year.

So, I'm looking at a particular MAPD plan offered through the company from which I retired. Stelara is in its Oct 1 2021 formulary but not sure if it is listed as a drug plan benefit or a now defunct medical plan benefit.

If a drug plan benefit, there is a confusing set of rules to determine the copay. I understand that MAPD plans must meet a minimum co-pay standard establish by Medicare. So some plans are better than the medicare standard. For my particular plan the copay is 33% during the Initial Coverage Stage, 25% during the Coverage Gap Stage, and 5% during the Catastrophic Stage. The coverage gap thresholds are $4,430 and $7,050 which is apparently the medicare standard threshold values. My plan description includes the footnote "After beneficiary's yearly out-of-pocket drug costs reach $7,050*, beneficiary pays the greater of 5% coinsurance or $3.95* copay for generics and $9.85* copay for all other drugs.
The asterisk * - CMS Mandated Changes for 2022

Still lots of questions...but if the retail cost per injection is $15,000 and I get six injection per year, my total out-of-pocket would be $10,800....I think, haha.
 
"Retail cost varies by specialty pharmacy. It’s close to $23000 per shot right now per the drug insurance claims for my kiddo on Stelara every 4 weeks"

I've had 20 injections thus far all administered by a hospital infusion center and billed to my medical plan. I built a spreadsheet of all the various cost data presented in the "Explanation of Benefits" documents. The infusion center pharmacy has billed the insurance Co. between $6,000 and $11,000 for the Stelara over the course of the 20 injections that I've had since 2018. The contract price between the provider and the insurance co has ranged from $3,900 to $7,000 while I was covered by a commercial plan prior to turning age 65.

Turns out the infusion center pharmacy purchases the Stelara from a drug wholesaler, hence the "low cost". I had considered the use of a specialty pharmacy at one time but they also were throwing around the $20k+ number. What a racket!

The damnedest thing is that since being on a medicare advantage plan, the insurance company is paying the provider more than they billed. Apparently something to do with medicare...
 

my little penguin

Moderator
Staff member
We are forced to use a specific speciality pharmacy per the commercial insurance-tried to get it through medical side by using infusion center for injection
Commercial Insurance refused to permit it .
Have to use the prescription insurance and specialty pharmacy per their rules
 

Scipio

Well-known member
Location
San Diego
If the current "climate change" spending bill that was recently agreed to among the senate Democrats gets passed by both houses and signed into law it could be a huge relief to retired IBD patients on Medicare or others who receive federal healthcare and are on Stelara or other expensive medications. Because the bill also contains healthcare reform provisions that would limit patients' out-of-pocket expenses under the Part D drug plan to $2000 per year beginning in 2025.

This of course assumes that the provision remains in the text after amendments and the Republicans fail in their vigorous efforts to block the bill. This will be huge savings to Medicare patients on Stelara who currently pay tens of thousands of dollars out of pocket.
 

Scipio

Well-known member
Location
San Diego
The bill I mentioned above did in fact pass congress and was signed into law by Pres. Biden. It does limit patients' out-of-pocket expenses under the Part D drug plan to $2000 per year beginning in 2025, which is potentially great news for patients on Medicare who are prescribed Stelara.

The only thing that gives me pause is that, according to the article I read about it, the law does not provide new funding to make up the difference once the $2000 limit is passed. Those costs are to be born by the insurance companies. We will have to see see how it all actually operates, but it's easy to envision that insurance companies that provide Part D coverage will get even more reluctant to approve patients to receive Stelara than they are already, since every patient will blow out the $2000 every year on the very first dose, leaving the company to pay for the rest.

I'm sure the companies can think up all kinds of creative obstacles to prevent anyone from being prescribed Stelara.
 
This year, 2022, is the first year my Stelara was covered by a part D plan. I've self administered and have been billed for five injections. The cost & co-pay data was all the same for injections 2 thru 5. So, I don't expect my final injection for the year to be any different. I didn't pay the "other payments" amount, I don't know who did.

DatePlan PaidYou PaidOther
Payments
Drug Price &
Price Change
Feb
18,834.67​
3,707.32​
4,145.81​
26,687.80​
Apr
25,353.41​
1,334.39​
0.00​
26,687.80​
June
25,353.41​
1,334.39​
0.00​
26,687.80​
July
25,353.41​
1,334.39​
0.00​
26,687.80​
Sep
25,353.41​
1,334.39​
0.00​
26,687.80​
Nov
25,353.41​
1,334.39​
0.00​
26,687.80​
Total
145,601.72​
10,379.27​
4,145.81​
160,126.80​
 
If the current "climate change" spending bill that was recently agreed to among the senate Democrats gets passed by both houses and signed into law it could be a huge relief to retired IBD patients on Medicare or others who receive federal healthcare and are on Stelara or other expensive medications. Because the bill also contains healthcare reform provisions that would limit patients' out-of-pocket expenses under the Part D drug plan to $2000 per year beginning in 2025.

This of course assumes that the provision remains in the text after amendments and the Republicans fail in their vigorous efforts to block the bill. This will be huge savings to Medicare patients on Stelara who currently pay tens of thousands of dollars out of pocket.
Hmmm....its great that you posted all these details!!!...

I just started those Stelara injections..... this post may have some influence on how I am going to be voting next month... lol !!!!... :)
 
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I described in an earlier post about the billable amounts for stelara when on a commercial plan (prior to age 65) vs the billable amount now that I'm on medicare. When the gov got involved, the price tripled. Also, when on medicare, you are not eligible for the manufacture's co-pay assist.
 
I will find out next year about all these issues with Stelara.
I just started the injections and the copay so far is 0.00 $ since this year I am already over my out of pocket limit…🤨
Well hopefully Stelara will work for me!!!
 
I will find out next year about all these issues with Stelara.
I just started the injections and the copay so far is 0.00 $ since this year I am already over my out of pocket limit…🤨
Well hopefully Stelara will work for me!!!
just to clarify, you said you just started the injections. Do you mean that thus-far you've only had the loading dose that is administered by infusion?
 
Nope, I had the loading dose and then 2 months later I injected myself. The injection was not painful at all.
Since this thing is SOOOOO expensive I was a little bit freaked out when I injected it. But it was easy and everything went smoothly.

I feel fine so I assume I am in remission. The Dr told me that he will check the Calprotectin levels in 4 months.

When I was on Remicade my levels went down from almost 600 to the forties. I stopped Remi and they went up to a little more than 200.
My Dr always told me that he was always surprised on how good my labwork results were compared to how bad the mucosa was.

I had prostate cancer surgery 3 months ago and I had a bad relapse, very bad proctitis, with prednisone, mesalamine etc etc before the Stelara.
Now I feel great!!!!

I have another surgery later this month to remove a stricture in my terminal ileum at the anastomosis at the spot were I had the ileostomy. I hope after this one no more surgeries!!

I think Stelara is helping me big time. My insurance covered it no questions asked. Poor insurance....its almost 26k per dose.
 
Nope
I just realized these posts are about medicare so my responses wont apply here, so distegard them. I have commercial insurance with a big out of pocket but the good thing is that I have access to excellent health care with no wait times. I did not realized how important that is until I got prostate cancer.
 

Scipio

Well-known member
Location
San Diego
You don't need to be on Medicare to post on this thread. I started this thread and I'm not on Medicare, although I'm old enough. I'm still working and have commercial insurance (for now). But all Americans will be on Medicare sooner or later, so figuring out your best Medicare option to pay for your Crohn's medication is a concern to all US citizens.

Stelara has become the the drug I love and hate. I love how well it controls my Crohn's without side effects, but I hate how its obscene cost drives so many other aspects of my medical care. When thinking about any choice or option in healthcare decision making, the controlling consideration for me is always "How will this affect my insurance coverage and availability of Stelara?" Everything else shrinks into insignificance. Every time I get an unexpected letter or notice from my insurance company I'm immediately struck with the fear they have decided to reduce or deny coverage for Stelara.
 
Every time I get an unexpected letter or notice from my insurance company I'm immediately struck with the fear they have decided to reduce or deny coverage for Stelara.
Just got that letter today! Unfortunately, anti-tnf's are not an option for me as I had a neurological side effect to humira. As far as I know, the only other biologic that is an option for me is entyvio.
 

Scipio

Well-known member
Location
San Diego
Just got that letter today! Unfortunately, anti-tnf's are not an option for me as I had a neurological side effect to humira. As far as I know, the only other biologic that is an option for me is entyvio.
Get your doc to write an appeal letter explaining about the side effects. He may be able to overturn the denial of coverage.

And if you do end up on Entyvio at least you won't have to worry about part D coverage for it. It's an infusion so it should be covered under Part B as a medical procedure.
 
Hi All - I’m new to this forum.

I have been on Stelara for several years covered by Medicare Part B. 2023 will be the first year that my coverage is moving to Medicare Part D (Wellcare) and WOW sticker shock. My out-of pocket costs this year will be approx. $12,000 with Co-Pay, Deductible and Co-Insurance “Donut Hole”.

Janssen CarePath Co-Pay Assistance does not cover Medicare plans. I’ve checked all other possible assistance plans to no avail.

Am I missing something or is there help out there that I haven’t found?
 

Scipio

Well-known member
Location
San Diego
Janssen CarePath Co-Pay Assistance does not cover Medicare plans. I’ve checked all other possible assistance plans to no avail.

Am I missing something or is there help out there that I haven’t found?
No, you are not missing anything. You have hit on the sad reality facing anyone on Medicare who needs a very expensive specialty drug.

One minor clarification is that Janssen CarePath co-pay program would be perfectly happy to cover Medicare plans, but the Federal government won't allow it. It considers these co-pay plans paid for by the drug companies to be a form of kickback.

The cheapest Medicare coverage for Stelara that I have found is offered through Kaiser Medicare Advantage plans, but they have the disadvantage that you must switch to Kaiser doctors. Your current GI will not be covered (unless you are already on Kaiser insurance and seeing a Kaiser doctor).

This bleak situation is currently set to improve in 2025 when the reforms passed under Biden's massive infrastructure bill take effect and maximum out-of-pocket drug costs under Medicare will be cut to $2000/year. So if you can financially hold on until 2025 things might get a lot better then - provided that Biden's political opponents do not succeed in rolling back the provisions of that law - as they have promised to do if and when they get back in power.
 
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Thank you very much for your reply. I am planning to meet with my physician to discuss alternatives to Stelara and I’m curious of the experience of others in this forum who have switched from Stelara to another medication.

I am being treated for Psoriatic Arthritis and Psoriasis, starting with Enbrel, then Humira, then Remicade and now Stelara. I am very happy with Stelara but have to think and consider outside the box.
 
I just wanted to thank Scipio for all his research on finding an acceptable price for Stelara on Medicare Advantage. I am 66 and have UC. I have developed antibodies against Humira and my doctor wants to have me try Stelara. I have AARP United Healthcare Medical Advantage HMO-POS. After 3 hours online and on the phone I was unable to get a price from UHC, and my local pharmacy said they would need an RX to tell me.
i guess I’ll try more today perhaps with a UHC insurance specialist. I went over income to receive free Humira after this year and my dr. doesn’t think it will work anymore anyway.
Before I found out my recent lab results I decided to start taking some profits in my brokerage account with the long term goal to get into more conservative mutual funds (or money mkt cash) and less individual stock, so unfortunately I have probably ruined my chances for any financial assistance.
The best I have done is with this and other forums so far. Like Scipio, I am aware of the $2,000 cap on out of pocket prescription charges for Medicare patients for 2025. I just hope the law doesn’t change before then. Thank you for the valuable information here, and if anyone can give me a rough idea of their Medicare Advantage costs for 1. the initial infusion and 2. the subsequent 5-6 shots, I would be very appreciative. I will post any concrete information I discover. Thanks all.

Nick in FL.
 

my little penguin

Moderator
Staff member
Without any insurance Stelara is $26k to $29k per shot for 90 mg syringe.
Infusion will be covered as a medical expense/procedure which just happens to infuse Stelara so the infusion center /hospital can get a cost on that for you
 

my little penguin

Moderator
Staff member
Johnson and Johnson has some assistance programs as does PAn foundation (never used this one so ..)
Your hospital social worker may have other groups that can help as well
 

Scipio

Well-known member
Location
San Diego
Infusion will be covered as a medical expense/procedure which just happens to infuse Stelara so the infusion center /hospital can get a cost on that for you
Medicare coverage for Stelara as a medical procedure under Part B, if administered by a health professional at a Drs office of infusion center ended in October, 2021 when CMS added Stelara to the SAD list (Self Administered Drugs). So now nearly all traditional Medicare plans cover Stelara under Part D - covering only about 33% of list price, which means the out of pocket cost is in the vicinity of $20K for each 90 mg dose.

For Medicare Advantage plans, the best price is still though Kaiser.
 
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Thanks. Too expensive. Might have to resort to prednisone or budesonide to supplement mesalamine.
What about moving to Catastrophic phase after paying $7,400 and then paying 5% copay? Wouldn’t that be less than 20k per dose? I’m guessing I would start with 45mg.
 

Scipio

Well-known member
Location
San Diego
Thanks. Too expensive. Might have to resort to prednisone or budesonide to supplement mesalamine.
What about moving to Catastrophic phase after paying $7,400 and then paying 5% copay? Wouldn’t that be less than 20k per dose? I’m guessing I would start with 45mg.
Not all the Part D plans charge the full amount but most do. There are two plans here in the San Diego area that offer Stelara coverage for about $20K for an entire year (assuming a 90 mg dose administered every 60 days). And Kaiser will charge only about $6K for an entire year, but again, you have to switch to Kaiser doctors.

Check on Medicare.gov to see what coverage is available in your area.
 
Thanks Scipio. My area of NE Florida seems to be mainly United Healthcare, Humana and Florida Blue. I have not seen any Kaiser plans offered. I’m going to call my ins agent and ask for help.
 

Scipio

Well-known member
Location
San Diego
Thanks Scipio. My area of NE Florida seems to be mainly United Healthcare, Humana and Florida Blue. I have not seen any Kaiser plans offered. I’m going to call my ins agent and ask for help.
I went on Medicare.gov and pretended I lived in Panama City, FL and it offered me the same $20K plans as here in San Diego, bit it did not turn up any Kaiser Advantage plans. Too bad.
 
Lets find out how low the price would be…

here in the States patients pay huge amounts of $ to the drug companies because “they need that because research for new drugs is very expensive”…….so that people in the rest of the WHOLE world can get them for a fraction of their cost in the USA…..what a joke!!!

so we are subsidizing them for the rest of the world….

And that should be ok for let’s say to help poor African countries…..but people in high income countries like Europe Japan etc etc also get them for cheap….

sorry I had to vent.

my Stelara treatment is costing my insurance company more than 500k a year (on a monthly shot)

in a few years I HAVE to get Medicare….I would need to switch to something else if they don’t get the price down…..
 

Scipio

Well-known member
Location
San Diego
….I would need to switch to something else if they don’t get the price down…..
I'm well past retirement age, but I have been forced to keep working for this very reason. I don't want to switch away from a medicine that is working well for me, but the cost under Medicare will be ruinous.
 
AARP Medicare Advantage from UHC CA-035P (HMO-POS)
Average monthly drug cost: $277.36
Why average? AARP Medicare Advantage from UHC CA-035P (HMO-POS)
Monthly premium
$25
Annual estimated drug total
$3,328.35
 

Scipio

Well-known member
Location
San Diego
AARP Medicare Advantage from UHC CA-035P (HMO-POS)
Average monthly drug cost: $277.36
Why average? AARP Medicare Advantage from UHC CA-035P (HMO-POS)
Monthly premium
$25
Annual estimated drug total
$3,328.35
Yes, I see similar estimates when I look at the website, but when I look at the same plan on the medicare.gov it says that my co-pay for a year's worth of Stelara will be $190,000. So which one is right? Of course I'm hoping that it's the $3K one and not the $190K one. But other sources say that Stelara is a Schedule 5 specialty drug, which means that Medicare will cover only 33% of the full retail price - which aligns with the $190K price tag.

My nightmare scenario is that I sign up for the $3K plan, but then when I actually go to get the prescription filled next year the story turns out to be "Oops, it's actually $190K and not $3K like we said."
 
Was wondering how many people following this thread are enrolled in a Medicare Part D plan. My understanding is that all Part D plans have to follow the same medicare rules. It'd be interesting to compare notes.

I've been taking stelara since 2018 and turned 65 in 2021. I'm in my second year covered by a Part D plan. For 2023, my plan had a total of $10,018 in co-pays for my six injections.
 
Has anyone found a Medicare Advantage or Part D plan that provides good coverage for Stelara?

The drug so far is working well for me, so I would rather not switch. And I'm currently employed and on the Janssen CarePath coverage, which is great -- only a $5 co-pay per dose. But looking ahead I'd like to retire in the next year or two so I'm starting to shop Medicare plans. And Medicare insurance is not eligible for the CarePath program.

So far a cursory search has shown me that more than half of the companies out there don't cover Stelara at all. And the ones I've found that do cover it only partially, and thus they require a hefty co-pay. I recognize that I will have to pay more than $5 per dose out of pocket, but I'm hoping not to pay thousands per dose. So if anyone has found a Medicare drug coverage plan that does a decent job of covering Stelara expenses please post it up.

Thank you.
[/
 

Scipio

Well-known member
Location
San Diego
New Developments
As I posted in post #24 upstream in this thread, out of pocket drug costs for Medicare recipients was limited to $2000/year by Pres. Biden's new infrastructure/climate change law, beginning in 2025. This is still true. What I recently found out is that the same law also reduced out-of-pocket drug costs to about $3300 for 2024.

This is great news for Medicare recipients, since a year's worth of Stelara (90 mg x 6 doses/year) without this limit would have a Medicare co-pay of about $190,000 per year. This means I can finally retire this year. I've been working well into Sudden Death Overtime in order to keep employer-provided insurance coverage to pay for my Stelara habit. Now I can sign up for Medicare Part B and start shopping for Medicare Part D plans right away. I'll let you know how it goes.
 

my little penguin

Moderator
Staff member
Fingers crossed and good luck 🍀

Also of note
Stelara now has a biosimilar which should be released by Jan 2025
Already fda approved
Not sure if that removes Stelara from the list of drugs to undergo negotiations with Medicare or not since it will now have competition.
 
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