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Cheapest option when Humira stops working for Medicare patient

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Posted 6/3/2023 4:23 PM (GMT 0)
After 2 1/2 years my Humira has stopped working. 14 weeks of cramps and worse. Colonoscopy in 2 weeks. Lab work shows Humira level low and antibodies to Humira very high. Notes in lab report indicate a need to switch biologics.
I was getting Humira free but I went over income in 2022 so this is probably last year.

What can I suggest to my dr. when he recommends change to different expensive biologic?

Thanks in advance for any advice. I take 4 mesalamine tabs daily.

Nick
Posted 6/3/2023 5:08 PM (GMT 0)
You’re on Medicare. Do you have a supplement and if so which plan? What about your prescription plan?

I have supplement plan F which pays the 20% that regular Medicare doesn’t pay. So far, infusions and the medication used for are covered by the medical side and not prescription coverage. So my entyvio infusion does not cost me anything out of pocket. Remicade would be the same.

All other meds would be covered under the prescription side. I don’t know which ones have assistance for Medicare patients. When the cap on prescription costs happens, that will make a huge difference. I think it’ll cap at $2000? But I’m unsure when that will happen. Hoping it’s 2024! That’s something to check though. As you know, currently Medicare patients are not eligible for copay programs. But some drug companies have an assistance program for us that gives us free medication. You’d have to check with each drug manufacturer to see. I think rinvoq may have one?
Posted 6/3/2023 10:11 PM (GMT 0)
Thanks for the reply. That’s such a relief to know Remicade and Entyvio would be covered under regular Medicare. I have AARP United Healthcare Medicare Advantage. The $2000 out of pocket drug cost is scheduled to take effect in 2025, IF the law doesn’t get changed before that! I sure hope not.
I had free Humira through this year but I think I went over income with increases interest, dividends and capital gains, but I suppose my dr. wants to switch my biologic. It’s just such a relief to know regular Medicare would handle that. What a pain this whole condition is, physically, mentally, financially and emotionally! Thanks for the response. Day by day. 😊
Posted 6/3/2023 10:14 PM (GMT 0)
You have a Medicare advantage plan which is quite different from regular Medicare plus a supplement. In that case you would have to talk to a representative. Or your dr might be able to research for you.

You could inquire about switching to regular Medicare plus a supplement.

Also a hint — I wouldn’t disclose additional income to an individual company. Unless they require you to show copies of your tax return they have no right or recourse to double check the figures you give them.
Posted 6/4/2023 2:15 AM (GMT 0)
FYI, Nick-- Forum Moderator Straydog has posted several times about Medicare Advantage Plans being difficult to dis-enroll from. There was a discussion about that in posts by EnjoyGolf earlier this year, in case you want to look them up in the archive. He was researching his options for switching retiree medical & Rx insurance. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
Posted 6/4/2023 2:36 PM (GMT 0)
Medicare covers Rinvoq which I would highly recommend. The pharma company (Abbie) who makes Rinvoq will give it to you free if you can't afford it.
Best of luck!
Posted 6/4/2023 9:14 PM (GMT 0)
BeatUC what medicare plan do you have? Is it Advantage or a Part D Supplement? I am wondering what plans cover Rinvoq and how you find out the coverage.
Posted 6/4/2023 10:06 PM (GMT 0)
I have a Medicare advantage plan, but I/m pretty sure Rinvoq can be covered no matter which plan you have.
More info here
https://www.rinvoq.com/content/dam/upa/documents/pdf/rinvoq-complete/us-rnqr-200205-rinvoq-understanding-medicare-digital-pdf.pdf]
Posted 6/5/2023 2:20 PM (GMT 0)
Nick, to switch to regular Medicare you have to wait until mid October when open enrollment starts, I believe it ends on December 7th. Medicare would become effective January 1, 2024.

I have regular Medicare with UHC as my supplemental to Medicare. I believe they are in the top 3 of supplemental plans.

You also need to check with UHC to see if you need to give a 30 day written notice that you are leaving the program. Some insurance companies require this.

Prescription coverage is Part D, so you will need to check on this too.

Good luck with whatever you decide to do. It can sound confusing, start talking to Medicare first.
Posted 6/5/2023 2:48 PM (GMT 0)

beatUC said...
I have a Medicare advantage plan, but I/m pretty sure Rinvoq can be covered no matter which plan you have.
More info here
https://www.rinvoq.com/content/dam/upa/documents/pdf/rinvoq-complete/us-rnqr-200205-rinvoq-understanding-medicare-digital-pdf.pdf]

Link didn’t have info about Medicare and rinvoq. My experience with Medicare prescription costs is not so much if the med is covered but if you can afford to pay for it each year since as of now there is no cap on out of pocket.

Beat just curious what your cost is for rinvoq.
Posted 6/5/2023 7:37 PM (GMT 0)
BeatUC
This link did not work for me but I appreciate the thought. Trying to navigate medicare is such a pain and the medicare number I called was zero help. She told me she cant give opinions on plans and that it is illegal to discuss members’ prescriptions. So I am doing everything online and plan to call all my doctors to see what their office accepts.
Posted 6/5/2023 11:29 PM (GMT 0)
Wasn't Geezernow (a senior forum member) having a problem this past winter with his insurance wanting to terminate his Rinvoq coverage? I recall his posts about being kept on pins & needles for about a month over continuing coverage. / Old Hat (40+ years with left-sided UC; in remission taking Colazal)
Posted 6/6/2023 12:47 AM (GMT 0)
I thought regular Medicare only covered drugs/medications if it was an infusion like Remicade, chemo or a medication that must be administered by a medical professional with the use of an infusion pump....?

I don't believe original Medicare covers pills or self injectables--you need a supplement with drug coverage to do that... Or Medicare drug coverage. But with Medicare drug coverage you are not eligible to use any of the drug reimbursement plans from the drug manufacture.....

Is this correct or am I misunderstanding this?.

Clo
Posted 6/6/2023 4:20 AM (GMT 0)
Yes clo you do need a Medicare part D for prescription drugs.

Medicare patients are not eligible at this time for COPAY programs (where you are paying $x amount and then I believe your insurance does cover some of it somehow — or maybe the drug company picks up the rest?).

But many of the drug companies also run another assistance program where they give you the drug for free. And Medicare patients are eligible for that. It involves an application and is income based although they don’t have a way to verify your income. You have to re-apply each year. They will verify with your insurance that the medication is too expensive (they have some sort of formula they use). Once approved they ship the medication to your house, usually 90 days at a time.
Posted 6/6/2023 6:24 AM (GMT 0)
Clo, original Medicare covers some Rx meds under Part B, such as infusions, but oral med Rx drugs mostly require a Part D enrollment in addition to Parts A (hospitalization coverage) and B (doctors, labs & Dx test coverage mainly). This can be confusing, but the annual govt-issued Medicare and You handbook recently got more specific about which recommended senior preventative Rx meds are covered by Part B or Part D. A couple years back I got into a billing problem because the TDAP vaccine for seniors was covered by B, whereas pneumoccocal was covered by D. Shingrix vaccine was also a B, but may be moving to D for 2024. So everyone enrolled in original Medicare should acquire either a free paper copy of the handbook annually via snail-mail or register on official govt. Website to receive its e-version online by the October 15 start of Medicare's annual open enrollment period, that Straydog just indicated has a closing date on Dec. 7. Some seniors have their Medicare Part D meds covered by their former employer or workplace union so they are excused from applying for Medicare Part D supplement plans. / Old Hat (40+ yrs with left-sided UC; in remission taking Colazal)
Posted 6/6/2023 10:25 AM (GMT 0)
Every state has insurance advocates who can help you find the best policy for a supplement. I remember when this was discussed before someone mentioned this. I did some research and talked to a Medicare representative who gave me the number of the state representative and that person gave me a number for the local agency. The local agency was very helpful and answered my questions (mine were wanting to know if I could keep my employer insurance and completely skip medicare as long as I was still working -- I can). The local agency told me to call back when I was ready to sign up for medicare and that they had independent insurance brokers who can help pick the best supplemental plans for me.
Posted 6/6/2023 3:03 PM (GMT 0)
Do Medicare prescription drug plans cover Rinvoq?

Yes.
89% of Medicare prescription drug plans cover this drug.

https://www.goodrx.com/rinvoq/medicare-coverage
Posted 6/6/2023 6:58 PM (GMT 0)
Well yeah. Medicare plans cover rinvoq. But at what price? GoodRX price (retail) is $6000 for 30 day supply. Each part D prescription plan will have different prices but my bet is that it’s still unaffordable. Even if it went down to $1-2k I couldn’t afford that each month.
Posted 6/6/2023 7:04 PM (GMT 0)

FlowersGal said...
Well yeah. Medicare plans cover rinvoq. But at what price? GoodRX price (retail) is $6000 for 30 day supply. Each part D prescription plan will have different prices but my bet is that it’s still unaffordable. Even if it went down to $1-2k I couldn’t afford that each month.

My doc says the company who makes Rinvoq has vowed to make it affordable for everyone. I never thought I'd be on an $80k drug but I pay 0.
Instead of complaining about the price, talk to your doctor, see what can be worked out. As I said, my copay is 0 under a Medicare advantage plan.
Posted 6/6/2023 7:17 PM (GMT 0)
Not complaining. Just trying to point out that Medicare plans are complicated and it takes a lot of research to find out what your cost will be. Glad to hear that you have a $0 cost on your plan.
Posted 6/6/2023 7:32 PM (GMT 0)

FlowersGal said...
Not complaining. Just trying to point out that Medicare plans are complicated and it takes a lot of research to find out what your cost will be. Glad to hear that you have a $0 cost on your plan.

Thank you!
as I understand it, altho the drug is crazy expensive, it should never cost the patient more than $50 a month.
best to you!
Posted 6/20/2023 8:45 PM (GMT 0)
I appreciate all the input. Here is where I stand. I have been receiving free Humira through Abbvie Patient Assistance Program. They do require you to submit your most recent 1040 tax return for continued eligibility.
I had a colonoscopy today and my doctor said Humira is not going to work based on my lab work showing low amount in system and very high antibodies against it. I get it free through the end of the year including 6 pens delivered 6/21 (tomorrow). However, my dr. does not think it will be effective any more. I was taking every other week and might take this last shipment every week and see if any change.
Starting week 14 of high inflammation and cramps and urgent bowel movements but not horrible flare symptoms.
My doctor has called in probably 3 months of mesalamine enemas because that’s what I took my first year of diagnosis (2020).
He wants me to take Stelara starting with one infusion and then a shot every 8 weeks. It looks to be very expensive.
I have AARP United Healthcare Medicare Advantage plan and I really don’t want to try to switch plans.
If I start a new biologic I will notify Abbvie and stop any further Humira shipments allowed through 2023.
However, I will check with my plan but I am in the donut hole already this year and I’m afraid Stelara will be too expensive.
I’ve been taking four .375 mesalamine tabs every morning.
Any recommendations on me researching any cheaper alternatives? I’m afraid my income last year and this year, due to capital gains, dividends and increased interest on cash money mkt acct. has made me ineligible for future payment assistance plans…I know…more money, more problems…but I live alone and do not have a wife or kids so I have basically been saving for any medical expenses and long term care.
I will look into Entyvio. Anyone else with a Medicare Advantage plan that is above income for assistance? What do you recommend when faced with a biologic price that just seems too expensive to pay?
Thanks in advance and I AM truly thankful for having some savings and for your support.

Nick in St. Augustine, FL
Posted 6/20/2023 9:08 PM (GMT 0)
I would call stelara patient support and see what they offer.

Not all assistance programs ask for a copy of your tax return. I get Aimovig from Amgen and my husband just started Dupixent (Sanofi) and neither one asked for verification of the income figures we gave them.

I think someone else here said Rinvoq has a free program too so that’s a possibility. BTW not sure how advantage plans cover infusion medication. It could be completely different from traditional Medicare + Supplement.
Posted 6/20/2023 11:43 PM (GMT 0)
Rinvoq is also manufactured by Abbvie if that makes a difference? (I am in Europe and understand nothing about the US insurance systems other than that they are complicated to navigate...)
Posted 6/21/2023 8:59 PM (GMT 0)
Apparently Janssen that makes Stelara I think as a subsidiary to J&J no longer offers its patient assistance program to Medicare patients. I still haven’t gotten a straight answer on the cost of Stelara but it sounds like it will be at least 8-15k a year, if not more. Apparently the infusion is now part of Part D. Everything I find out is bad news.
Right now my inclination is to manage with current mesalamine pills and supplement with prednisone or budesonide, although I really hated prednisone when diagnosed with pan colitis in 2020.
I’ll look into Rinvoq.
What I read recently is if you develop antibodies against Humira, Stelara is the best change…a different type of drug.
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