Biologics and medicare (moved from Fired my doc thread)

Hi @schoonerbird, sorry for the problems with your rheumy! I hope the replacement works out better.
I have a question about something you mentioned. You said you need a biologic that’s covered by Medicare. I’m wondering what biologic you are on now? I’m nearing retirement and one big reason why I haven’t done so yet is because I heard Medicare doesn’t cover Enbrel. Enbrel is doing so well for me I’d rather not switch, but I guess it’s inevitable.
Thanks in advance for any info you can share about Medicare and biologics.

Getting the right biologic that Medicare will pay for was for me essential. This was one of the disagreements that I had with my old doc. He wanted to put me on Humira. I actually did try it for a few months, but without success. But Medicare would not pay for any self -injectable biologic, so I was told. It was going to cost me around $10,000 per year had I stayed on Humira. The distinction Medicare made was that if an INFUSION was required at either a hospital infusion center or a doctor’s infusion center, then it was covered under Medicare Part B. If the medication used was a self-injectable, it was covered under Medicare Part D (the Rx coverage), and included any required co-pays. I am now on Simponi and have been since last fall, with good success so far. Simponi is given to me at my doctor’s infusion center, and is covered by Medicare Part B for 80%. I have a supplemental policy to cover the remaining 20% Medicare doesn’t pay. The premium for the supplement is a little high, but nothing like the cost of the medication if I did not have the supplement. Good luck as you plan for your retirement. I hope this was helpful.

Thank you! Very helpful!
Fortunately, I love my part-time job so I can continue to work for awhile yet (if I can keep up the pace with all my kids and grandkids!).

But, a question about Simponi…so, if it’s an infusion (that word just makes me cringe) does that mean it’s in your system for a longer stretch of time than an injectable? I really like the fact that Enbrel is taken at home once a week…if for some reason it affects me adversely, that could be corrected in a short time. With infusions lasting months, I’m afraid if I have terrible SEs I’d be miserable for a long time!

My husband is retired and his Medicare supplement costs around $200 a month. It’s well worth the price, though. I’m happy to know Medicare and the supplement pay 100%, but disappointed they don’t cover injectables taken at home.

Simponi Aria is infused every 2 months after the initial loading doses. I really like it. However i found that i have to do a bit of planning or things can get a bit dicey. For some reason I invariably have a small (or big as I discovered at the DC conference we just attended) flare of the P. at infusion time unless I take my weekly MTX a day or two ahead of the infusion.

I actually look forward to infusion day… Not because of the relief, but just the quiet afternoon at the infusion center with folks I have come to know over the last year. There are always treats, coffee etc. On valentines day the docs made us red velvet pancakes. My clinic only has one infusion center though so the cancer folks are there too. I thought it would be depressing, but instead it has become really inspirational. The simpomi BTW seems to have fewer “Valleys” though the “peaks” aren’t quite as high than weekly injections. I am very pleased overall.
@Grandma_J you may want to spend some quality time with your insurance provider before settling in on a part D supplement. They vary widely. Mine does cover injectables but the deductible is met with the first few injection injections so it can be a bit pricey depending on on your deductible. By 2020, the prescription drug coverage gap will be closed completely, meaning that the donut hole will cease to exist, and you will only have to pay 25% of the cost of your prescription drugs until you reach your annual out-of-pocket limit. carefully shopping the part d can really have an effect. Cost of Enbrel for me would be less that 1200.00/year (and all my other meds)…

FWIW there has been legislation in committee since Obama to provide Equal Access to Biologics (eliminating the tiers.) It has been bogged down for awhile (6 years at least) because of oher riders believe it or not though The GOP has brought out a version that may even be better called the Creates Act. In the meantime acess to biosimilars will be the same as generucs in several states and eventually nationally. Heres the current list:

List of Licensed Biological Products with Biosimilarity or Interchangeability Evaluations to Date

(“FDA PROPER)” PRODUCT NAME BRAND/ PROPRIETARY NAME ® DATE OF FDA LICENSURE (mo/day/yr) BIOSIMILAR (B) INTER-CHANGEABLE (I) Treatment, major Cost / month examples
(retail includes discounts)
Manufacturer / Notes

adalimumab Humira 12/31/02 Original no Rheumatoid and psoriatic arthritis $4,537 (2 pens) Abbvie
adalimumab-adbm Cyltezo 08/25/17 Biosimilar no [Rheumatoid and psoriatic arthritis]
(http://www.accessdata.fda.gov/drugsatfda_docs/appletter/2017/761058orig1s000ltr.pdf) * Not available - patent litigation Boehringer Ingelheim patent litigation v Abbvie

adalimumab-atto Amjevita 09/23/16 Biosimilar no Rheumatoid and psoriatic arthritis; Crohn’s disease, etc.* Not availabl e“launch in 2017 was unlikely due to patent issues” (9/5/2017) Amgen

etanercept Enbrel 11/02/98 Original no Active rheumatoid arthritis; plaque psoriasis $4,537.83 retail Amgen
etanercept-szzs Erelzi 08/30/16 Biosimilar no Active rheumatoid arthritis; plaque psoriasis Not available -legal challenges Sandoz/Novartis. Legal challenges/delay

infliximab Remicade 08/24/98 Original no Crohn’s disease, ulcerative colitis. psoriasis, arthritis $1200 1 vial Janssen Biotech / Johnspn & Johnson
infliximab-abda Renflexis 04/21/17 Biosimilar no Crohn’s disease, arthritis, and psoriasis(FDA release) $735 for 100 milligram dose. Limited availability Samsung Bioepsis; fifth biosimilar to be approved in the US
infliximab-dyyb Inflectra 04/05/16 Biosimilar no Crohn’s disease, arthritis, and psoriasis(FDA release) $945 1 vial. “share: 2.3% of the overall infliximab volume,” Total US revenue = $23 million, 2nd ¼ 2017 Pfizer Biosimilars. second biosimilar to be approved in the US

Now I’m not entirley clear on this as the young lady I sat net to on a flight from Oakland to DC last month (it was a long flight…) is the Policy writer on this thing and works for Sen Grassley who authored it senate Bill 340. Whats scary to Me is the fct this stuff is being written and prepared by 14 year olds LOL…

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Grandma J, the response from tntlamb was right on. I had noticed that I had a minor flare right around the time of each infusion (every 8 weeks). I did not know the reason for this flare, but in my case it has been over in a couple of days. FYI, I inject my weekly methotrexate on Friday of each week, and my infusion day is a Thursday. The doc tries to keep the infusions on the same day of the week each time. So far, I have been very pleased with Simponi. I hope it continues to perform well.

I also encourage you to get as much info as you can on your Part D provider and what medications they cover. There ARE differences. Also, don’t neglect to check the formulary each year prior to renewal. I have discovered that sometimes a medication covered one year is not covered the next.

Thanks @tntlamb
So, I’m understanding from what you wrote that by 2020 Enbrel will be available to me if I’m on Medicare and a supplement, but I’d have a 25% copay until my out-of-pocket max is satisfied?

I could handle that if my OOP isn’t more than a couple thousand $ per year.
I know a lot of people here have no problem with MTX—I don’t need it because I’m happy with just Enbrel. I can deal with some psoriasis and the small % of residual arthritis I still have. Besides that, I have lower than normal WBCs (leukopenia) and I’m not sure if MTX would be safe for me.
Thanks again for that information—it sounds promising. (Although, could you explain the above quote for me, please?)

@Grandma_J My formatting didn’t transfer is the simple answer. I just cleaned it up and deleted the “cancer meds” as they don’t really apply. Sorry for the confusion…

Wow, over a year later and I’m still dreading retirement because I don’t want to quit Enbrel. I consider myself very fortunate. I’m one of the rare ones who got quick relief from Enbrel and 6 years later I’m still going strong on it! It’s a great success story, and 6 years ago I could hardly be convinced it would turn out like this.

Despite the unique life we’re having this summer because of COVID, I’m feeling better than ever! I don’t think it’s all due to Enbrel—although Enbrel has a lot to do with it—but I’ve been eating a healthier diet trying to lose a few pounds (10 or so) and have nearly eliminated sweets. I remember before I went on Enbrel—I really wasn’t treating my PsA at all—I felt like a**, and I had noticed even worse after I ate sweets, especially ice cream. I do believe that sugar is our enemy. However, I’m sure if I wasn’t taking Enbrel my body would punish me, so eliminating sweets or taking supplements isn’t the cure-all.

I think about retirement a lot. I am lucky I’m part-time at a university and I’ve been working from home since April. My HR person had me fill out the Americans With Disabilities forms hopefully to enable me to continue exclusively working from home due to the dangers of COVID to a person on a biologic who has low white blood cells. I’m crossing my fingers and toes I get approved. I can do my entire job very efficiently from home. But, retirement is always on my mind.

I’d like to know if there have been any changes I should be aware of as far as what Medicare and a supplement could/would cover. I’m still dead-set on staying with my old trusted pal, Enbrel, and for how it saved my life 6 years ago I should be willing to mortgage my house to pay for it!!!

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