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How hard is it to get on Actemra (Tocilizumab) with PMR?
Polymyalgia Rheumatica (PMR) | Last Active: Apr 2, 2023 | Replies (51)Comment receiving replies
My doctor apparently has no problem writing a prescription for Actemra since I have "presumed GCA and am on 60 mg of prednisone". He had previously stated skepticism about my having GCA, since imaging has not shown it, so his willingness to write the prescription was unclear to me.
The means I can receive the $15,000 annual subsidy that Genentech offers for GCA victims using Actemra. (They ONLY offer it to those with diseases for which Actemra has been approved by FDA. GCA is FDA approved. PMR is NOT.).
Despite the fact that my Kaiser insurance pays $0 for Actemra injections, the Genentech $15,000 offset lowers my total costs to these values:
Weekly injections:
4 months of injections: $3546
6 months of injections: $12,864
Injections every 2 weeks:
4 months of injections: $5 copays
6 months of injections: $5 copays
I haven't been able to get any data out of Kaiser on IV infusions yet, but I hear they can be cheaper.
The trial published in NEJM shows that injections every week yield somewhat better results than every 2 weeks especially in terms of a quality of life measure that is somewhat vague to me, but presumably measures pain, stiffness, mobility. Here is the statement on this from NEJM trial:
"The mean increase (indicating clinical improvement) from baseline to week 52 in the SF-36 physical component summary score was 4.10 in the group that received tocilizumab weekly and 2.76 in the group that received tocilizumab every other week, whereas scores decreased (indicating a worse condition) in the two placebo groups…"
It is unclear to me what scale the SF-36 physical component summary is on (for example, is it 0-10 or 0-100 or what).
Hence, I'm not sure how meaningful an improvement from 2.76 to 4.1 actually is. It's not much improvement if the scale is 0-100, but it's a lot of improvement if the scale is 0-10.
Apparently Kaiser does not yet offer Kevzara to its members.
Replies to "My doctor apparently has no problem writing a prescription for Actemra since I have "presumed GCA..."
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Imaging while you are taking prednisone won't show the inflammation because it is "hidden" by prednisone.
The cost of doing an infusion might be less because the IV insertion and monitoring while you get the infusion are all a hospital expense. Hospital expenses should be covered by your insurance.
There is a concept of "bundling" hospital expenses. In some cases , the medications you receive while in the hospital are bundled up with the hospital expenses.
It just depends on your insurance policy. Insurance companies have a stake in this. I worked for an insurance company as a medical case manager for a brief period of time. I didn't like the job very much because the claim was frequently denied because the insurance contract didn't cover something. It was usually the employer that wanted to decrease their costs and buy the least expensive insurance policy.
Most of the work of a medical case manager involved negotiating with health care providers for an "all inclusive" rate as compared to everything being itemized. Maybe a person who works for your insurance company can provide better information. They might be able to negotiate something that decreases your costs. Doing this can be tricky because if the service isn't something that is covered by your insurance policy talking to someone might bring it to someone's attention.
Insurance claims department automatically flag some things for manual review but not most things. Most claims are paid without manual review because it is cheaper for the insurance company to just pay the claim without scrutinizing it too much.