Actemra coverage on Medicare in California?

Posted by redboat @redboat, Sep 12 11:38am

Can anyone comment on getting coverage for Actemra while on a Medicare plan, specifically in California?

I retired and at 65 am transitioning to Medicare. I am currently insured by Kaiser Permanente Northern California (KPNC). When I transition to Medicare, so far their "experts" have been unable to tell me if the KPNC Medicare Advantage plans cover Actemra.

I could also go on a Medicare supplement plan here in California, but again I am unsure which plans cover Actemra. (KPNC does not accept Medicare supplement plans, so I would need to switch medical organizations for this.)

Interested in more discussions like this? Go to the Polymyalgia Rheumatica (PMR) Support Group.

@dadcue

@redboat has an incredible story about how high his inflammation markers were. I'm not sure about how he was diagnosed with PMR but it was considered to be an extreme case. His response to Actemra was remarkable and as far as I know he is off prednisone and symptom free now.

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@dadcue It's true; weekly injections of Actemra worked great for me! Before starting Actemra, I was on 60 mg/day of Prednisone, which the ER doctors decided was needed after inflammation started making my eyes bulge out of my head while taking 20 mg/day of Prednisone. After starting Actemra, I tapered off Prednisone over a period of 6 months, with no relapses. I've been off Prednisone for almost a year now. After about a year of weekly Actemra injections, I went down to every other week, and I'm still doing that. I hope to get off Actemra in 2025.

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@redboat

Thanks @jlo2252 ! Assuming Kaiser Senior Advantage in Southern California is like Northern California's, Actemra should be covered. In NorCal, Medicare Part D coverage, which is needed to offset costs for Actemra, is included at no extra cost at Kaiser. There is a new alternative, called Tyenne, which I understand less expensive. But Tyenne and Actemra are both quite expensive. Without insurance or any offsets, Actemra is something like $40,000/year.

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@redboat
So I just found the handbook Kaiser sent me of my evidence of coverage(EOC):
Kaiser Permanente Senior Advantage (HMO) with Part D
They deduct $174/ month from my social security for my Medicare. My yearly out of pocket expense is $1000.
And yes they do cover biologics, injection or infusion at no charge. Don’t know if this is normal coverage for everyone. Like I said I had kaiser employee negotiated benefits and when I retired my benefits didn’t change from when I was working and they were good.

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@redboat

Thanks @jlo2252 ! Assuming Kaiser Senior Advantage in Southern California is like Northern California's, Actemra should be covered. In NorCal, Medicare Part D coverage, which is needed to offset costs for Actemra, is included at no extra cost at Kaiser. There is a new alternative, called Tyenne, which I understand less expensive. But Tyenne and Actemra are both quite expensive. Without insurance or any offsets, Actemra is something like $40,000/year.

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@redboar,
It’s nice to talk with someone who also has Kaiser insurance!
I cannot believe how expensive the biologics are! My daughter had kaiser thru her job, her coverage was quite different then mine. She has Crohn’s disease that she takes a biologic (Remicade) for. Normal cost is around $12,000 per infusion! Out of pocket she paid $200 per infusion! But it helped her a lot, so what choice does she have ?

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@dadcue

Sometimes I don't know how much of a benefit there is to take many medications. My view point comes from having to give medications to patients every morning. I would need to carefully get their medications ready for them every day. They were very sick people so they might need to take 20 or more medications first thing every morning. I just wasn't sure all the medications were helping that much. Sometimes I felt like I was contributing to their demise by expecting people to take so many medications.

Actemra is the one medications that seems to do me a lot of good. I am back down to taking 2 medications now not counting Actemra. My remaining medications are "as needed" or for "prevention" or totally optional.

There were so many people that had no idea what medications they took. All they knew was a doctor told them they needed the medication but they didn't know why. The 5 medication limit was more about putting a limit on doctors from prescribing so many medications.

When I was diagnosed with PMR and "other things" I was in the same boat for a long time. Many of my medications were prescribed to me to treat Prednisone side effects. I was giving myself more than 10 medications and I wasn't so sure all my medications were doing that much good.

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@dadcue
Believe when I say I understand where you are coming from about the medications doctors prescribe!! What the heck!! Do we really need all this crap?! I have high blood pressure and when they couldn’t control with one medicine, they would add another. And then they added another one—I’m on three meds for my BP!! I’m thinking I will have a stroke if I don’t take all these meds! Both my mom and her mom passed from strokes from high BP…..so I take all my pills. This is very scary to me! I also take meds for my asthma, PMR , diabetes and inflammatory arthritis. I try to stay on top of any of these interacting with each other—the pharmacy is good for this also. But it still bothers me that I have to take so many meds. And then by my own choice I have added some supplements to the mix! I take Calcium/Magnesium for my bones and co-enzymeQ-10 for general health and sometimes Odor-free garlic extract when I can afford to pay for all this stuff! I know that my diet can play a part in controlling some of my conditions, especially my diabetes. But it is so hard for me as I have always been a picky eater! I was such a sickly, underweight child, my parents just pushed whatever foods I would eat on me! Unfortunately, this included a lot of pasta and bread ( my family is also Italian!), a lot of carbs, little protein other then hot dogs, cheese , and just a lot of junk food like cinnamon rolls and donuts!! I’m a lot better then this now, but I still don’t eat a lot of veggies other then salads, carrots, celery and corn! I do eat a lot more protein with chicken, pork, beef , eggs and a little non shellfish fish. ( I’m allergic to shellfish) So you see my problem and probably one of the reasons I’m on all these meds!

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Hi @redboat
My Medicare drug plan did not offer much help with Actemra. I would’ve been paying thousands out of pocket. I contacted the Genentech Patient Foundation and I met their guidelines for providing it for free. They based it on whether your insurance company would cover it and your current income.

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@jlo2252

@dadcue
Believe when I say I understand where you are coming from about the medications doctors prescribe!! What the heck!! Do we really need all this crap?! I have high blood pressure and when they couldn’t control with one medicine, they would add another. And then they added another one—I’m on three meds for my BP!! I’m thinking I will have a stroke if I don’t take all these meds! Both my mom and her mom passed from strokes from high BP…..so I take all my pills. This is very scary to me! I also take meds for my asthma, PMR , diabetes and inflammatory arthritis. I try to stay on top of any of these interacting with each other—the pharmacy is good for this also. But it still bothers me that I have to take so many meds. And then by my own choice I have added some supplements to the mix! I take Calcium/Magnesium for my bones and co-enzymeQ-10 for general health and sometimes Odor-free garlic extract when I can afford to pay for all this stuff! I know that my diet can play a part in controlling some of my conditions, especially my diabetes. But it is so hard for me as I have always been a picky eater! I was such a sickly, underweight child, my parents just pushed whatever foods I would eat on me! Unfortunately, this included a lot of pasta and bread ( my family is also Italian!), a lot of carbs, little protein other then hot dogs, cheese , and just a lot of junk food like cinnamon rolls and donuts!! I’m a lot better then this now, but I still don’t eat a lot of veggies other then salads, carrots, celery and corn! I do eat a lot more protein with chicken, pork, beef , eggs and a little non shellfish fish. ( I’m allergic to shellfish) So you see my problem and probably one of the reasons I’m on all these meds!

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Gosh, if you could get yourself off sugar and carbs (which metabolize into sugar) and stick with salads the other vegetables you mentioned and high-quality proteins, You just might revolutionize your health and get off lots of those medications!

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@tls4

Gosh, if you could get yourself off sugar and carbs (which metabolize into sugar) and stick with salads the other vegetables you mentioned and high-quality proteins, You just might revolutionize your health and get off lots of those medications!

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I do understand the way sugar and carbs work on my diet and certainly how it would affect some of my meds! I even worked at one time for an endocrinologist who specialized in diabetes and hypoglycemia—although I did not have diabetes at this time in my life, I learned a lot there, especially about taking supplements in addition to diet—he was big on that!
I know that I’m doing better with my diet than I was. I’m still a picky eater and not much of a veggie eater, other than salads and a few cooked veggies. I do like most fruits, of course, but because of their sugar content I do have to go easy on those. My favorite source of protein is chicken, eggs and protein shakes— easiest to eat with my just ok set of teeth, lol! I know I’m a mess- I do appreciate your concern and suggestions and I know it could be a life changer for me—all I can say is I’m trying and I will try harder. I have an active, beautiful 10 year old grandson to be healthier for!!

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@jlo2252

I do understand the way sugar and carbs work on my diet and certainly how it would affect some of my meds! I even worked at one time for an endocrinologist who specialized in diabetes and hypoglycemia—although I did not have diabetes at this time in my life, I learned a lot there, especially about taking supplements in addition to diet—he was big on that!
I know that I’m doing better with my diet than I was. I’m still a picky eater and not much of a veggie eater, other than salads and a few cooked veggies. I do like most fruits, of course, but because of their sugar content I do have to go easy on those. My favorite source of protein is chicken, eggs and protein shakes— easiest to eat with my just ok set of teeth, lol! I know I’m a mess- I do appreciate your concern and suggestions and I know it could be a life changer for me—all I can say is I’m trying and I will try harder. I have an active, beautiful 10 year old grandson to be healthier for!!

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your doing a marvelous job.

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