How hard is it to get on Actemra (Tocilizumab) with PMR?

Because of sticker shock, I ignore what healthcare providers bill to Medicare and other insurance companies. In the case of Medicare, it is more about the "Medicare Approved" amount and not what is billed by my provider. We have a strange healthcare system where most healthcare providers take whatever reimbursement they can get from Medicare.

The VA system is even more strange. Legally, the VA can't bill Medicare because one government agency can't bill another government agency. However, the VA can bill my Medicare supplement because it is private insurance from United Healthcare. My supplemental insurance pays for the 20% that Medicare doesn't cover.

Provided Service: Tocilizumab infusion
Amount Charged $11,169.61
Medicare Approved Amount $3,396.64
Medicare Paid $2,717.31 (80% of the Medicare approved amount)
Supplemental Plan Paid $679.33

Fortunately, my copay is $0 for a hospital infusion of Actemra because the VA doesn't bill me for inpatient hospital services. Infusions are considered inpatient service for IV insertion and monitoring for the hour that Actemra is infused.

When I do my own injections weekly on an outpatient basis, I have a small copay for month supply of Actemra injections that the VA dispenses.. I wonder what each injection costs. I hope the VA gets the "bulk rate" because I'm extremely grateful to the VA.

It is no wonder insurance companies scrutinize healthcare claims.

To follow-up, my Kaiser rheumatologist had absolutely no problem prescribing tocilizumab despite the fact that he is uncertain if I have GCA.

He feels the diagnosis of PMR is quite certain., and that seems to be enough for him.

The question of payment is a not as clear. There is a program that reduces the "co-pay" to near $0 offered by the Genetech, the corporation that makes tocilizumab. To receive those funds, Genentech's web page states that the use must be for an FDA-approved "indication". Since PMR is not yet approved, an diagnosis of GCA or one of the other approved indications is needed.

I may be on my own for the co-pays unless I can get my doctor to at least say I have symptoms "consistent" with GCA.

Genentech says that elevated CRP and ESR are enough for them to believe the diagnosis. I have both of those. It's just that actual GCA is unclear to my rheumatologist...

I wouldn't think Genetech would care about the diagnosis as long as a doctor thinks Actemra is indicated and prescribes it. Insurance companies and/or governments are the ones who don't want to pay for expensive medications that aren't FDA approved for the diagnosis being treated.

I can understand an insurance company's reasoning and it is stipulated in almost all insurance contracts which someone agrees to. If your employer provides you with a health insurance benefit, then it is your employer who agrees.

Believe it or not, prednisone isn't FDA approved for PMR but prednisone is cheap and nobody cares about the cost! Historically, prednisone was used to treat PMR and it worked or at least prednisone "managed the symptoms" of PMR. There isn't much evidence that prednisone helps to "achieve remission" because it is believed that PMR "burns itself out" when you wait long enough. However, there is an abundance of medical evidence that "long term" treatment with prednisone comes with serious side effects.

My personal reasoning is that anti inflammatory medications treat inflammation regardless of the diagnosis. Nobody wants my opinion anyway and I don't have any authority to make the decision. I can only say Actemra worked for me and the diagnosis being treated was PMR.

Your inflammatory markers confirm that you have an inflammation problem but not what is causing the inflammation. Granted, doctors should know the diagnosis they are attempting to treat but a correct diagnosis is sometimes nothing more than an educated guess. If your inflammation is being caused by an infection, for example, then Actemra isn't indicated.

Good luck getting Actemra approved. My rheumatologist used the argument that PMR is thought to be caused by the same inflammation mechanism as GCA. Since Actemra was FDA approved for GCA, he thought it was likely that PMR would also respond to treatment with Actemra. My approval was made internally at the VA so it didn't need insurance approval.

Otherwise, KEVZARA (sarilumab) is now approved for PMR and it should work the same way as Actemra works. I don't think Genetech wants to lose the PMR market to another company so I would guess they will fund the research needed to get Actemra approved.

KEVZARA (sarilumab) is now approved for PMR and it should work the same way as Actemra works

Yes ... None of these medications work perfectly. Kevzara targets the same inflammatory mechanism as Actemra. However, Kevzara and Actemra aren't exactly the same so there might be some differences between the two.

For all I know, Kevzara might work better than Actemra. I just know that Actemra works for me. For me, Actemra works infinitely better than prednisone. I don't have anywhere near the side effects that prednisone probably caused me.

We all need to find what works for us as individuals. No two people are the same. If prednisone works for someone and a doctor prescribes prednisone then I would support that. I don't have a license to prescribe medications because I'm not a doctor. Everything I write is my own personal opinion based on my own personal experience. I try not to give any medical advice because I don't have a license for that either.

Here's my understanding of what I will be dealing with in terms of the payment schemes for Actemra and Kevzara.

My employer-paid medical plan at Kaiser Permanente covers NONE of the cost for either. Both are expensive. However, the pharmaceutical corporations substantially offset costs. Costs as Kaiser pharmacy:

Actemra weekly injections = $1070.91/month

Kevzara weekly injections = $3931.03/month

The pharmaceutical corporations, Genentech (for Actemra) and Sanofi US Regeneron Pharmaceuticals (for Kevzara), are both offering up to $15,000/year of the drugs for near $0.

This can reduce my out of pocket substantially; for Actemra it would be near $0. For Kevzara, the $15,000 will cover just under 4 months of treatment, then I would be on my own for the $3931.02/month...

Genentech requires paperwork showing a doctor prescription for Actemra to treat GCA (not PMR - Actemra is not FDA approved for PMR yet, and that is one to the stipulations). Perhaps surprisingly, their required justification for diagnosis for GCA does not requires a biopsy, but merely raised CRP and ESR. I have both of these in spades.

Sanofi requires paperwork showing a doctor prescription for Kevzara to treat PMR.

My next step is to get my rheumatologist to write a prescription. He's generally very easy to deal with, and collaborative, but in out last conversation, he was skeptical about a GCA diagnosis, although not PMR.

I'm not sure how these opinions will affect his prescription writing.

Will he still write a prescription for Actemra based on a diagnosis for GCA that I can show Genentech to receive their payments? I hope so.

Otherwise, I will probably go with Kevzara. My rheumatologist believes both are similarly effective, although my review of the results showed that Actemra looked better in terms of "adverse events".

The underlying cause of my rather severe inflammation is unclear, and it will always be guesswork - based mainly on imaging, blood markers, and my reported symptoms.

It is most likely some combination of PMR and non-cranial GCA. PMR is a very strong candidate, albeit with a few anomalies
- bilateral shoulder and pain BUT NO stiffness
- headache behind my eyes
- double vision
- limb claudication (pain) far removed from joints
- unheard of levels of inflammation for PMR - 1/250,000 levels).
GCA only indicated by blood markers and a few of my symptoms. MRI imaging of my head and a full-body PET/CT scan of my body did NOT detect the enlarged arteries of GCA. However the imaging was done after weeks to months of prednisone treatment, which is reported to reduce imaging's ability to see GCA.

CORRECTION: I will probably go with Actemra in either case. Unless tapering is successful in less than about 5 months, my out of pocket costs will be less with Actemra. Kevzara gets very expensive quickly once the $15,000 corporate offset is exhausted after 3.8 months.

(editing was ended before I completed the previous long dissertational comment)

"Actemra weekly injections = $1070.91/month"

Are you sure this is a monthly cost for 4 injections if given weekly?

I was told that the cost of each injection was roughly $1,000. I honestly don't know what each injection costs.

There isn't any rule that says you have to have to do an injection every week. I was actually started out on an injection every 2 weeks. Less frequent injections seem to work almost as well as my current weekly injections.

My rheumatologist doesn't want me to go any longer than 10 days between injections. I'm given some leeway on how often I do my injections. I try to do an injection on the same day each week but I sometimes forget what day it is.

I like doing infusions better. That way I'm scheduled for an appointment to get an infusion.

I think you are right about the costs.

Perhaps the pharmacy is assuming an injection once/month instead of once/week.

The attached pdf is from the Kaiser, and the Actemra cost does look like it is for a single injection. And the Kevzara cost I quoted was actually only for 2 injectsion With this understanding, costs look more like

Actemra = $4641/MONTH

Kevzara = $7853/MONTH

The $15,000 corporate offsets will not go far, about 3.2 months with Actemra and 1.9 month with Kevzara.

Or I could get shots bi-weekly and double these periods.

The studies I saw indicated this reduced effectiveness somewhat though - here's a some quotes from New England J of Medicine study on Actemra:

"A total of 56% of the patients in the group that received tocilizumab weekly and 53% of those in the group that received tocilizumab every other week had sustained remission at 52 weeks."

"The percentages of patients who had a flare were 23% in the group that received tocilizumab weekly, 26% in the group that received tocilizumab every other week"

"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..."

Still not entirely sure my Kevzara costs are right. The treatment regime Solina suggests on their website is based on injections every 2 weeks. I'm surprised they are not trying to match Actemra costs from Genentech, especially since they both offer the same $15K annual offset.