Insurance coverage for Actemra infusion with straight Medicare?

Actually it is Tyenne, the biosimilar form of Actemra, that was ordered. That was my idea because I thought it might be cheaper that the brand name Actemra. $4500 a month sounds plenty high to me, more than I can afford!

Straight Medicare will cover Actemra infusions because they are given in a "hospital setting" and are considered to be "inpatient medications" instead of "outpatient medications." The problem is that Actemra isn't FDA approved to treat PMR. I was in the same boat because I was never diagnosed with GCA ... only PMR. My rheumatologist had to make a strong case for wanting me to have Actemra infusions and he managed to get it approved.

There have been people here with "presumptive GCA" but I think their doctor still had to get Actemra infusions authorized. I don't think the patient can do it and some doctors aren't willing to make the case for Actemra infusions.

The doctor put in a new diagnosis code. I have the code number and need to call Medicare and find out if it will work. As I wrote previously this will take a lot of effort and they still may not give me a definitive answer until the bill is submitted. I fought another bill for over a year before I finally won. It was due to an error in entering my insurance information on an ER visit. I was told my insurance would cover the visit for a bad cut when I went to the ER. I'm just looking for other people's experiences on the Actemra infusions.

"Dr Google" for the win! The code M31.6 is the code for "other, giant cell arteritis". I probably should be good.

That's good to know. I was thinking it would just depend on how it is coded. I don't think there are any definitive tests that confirm GCA, It mostly depends on a doctor saying you have GCA and coding it that way. I hope it works. Seems like you know how the system works.

Actemra probably works for PMR even though it isn't FDA approved for PMR. Actemra is off patent and biosimilars are already appearing. That should bring down the cost. Since Actemra is no longer patented, I doubt any more research will be done to get it FDA approved for anything else.

I started out doing Actemra injections when it was first approved for me. I was switched to Actemra infusions when I had a surgery that was pending. I needed to be off Actemra for a month before surgery and a month after surgery. I didn't think I could go 2 months without an injection.

Going 2 months between infusions was probably doable. Seven weeks was the longest I have gone without an infusion of Actemra I don't think the infusions have to be done exactly every 4 weeks. I sometimes go 5 or 6 weeks without having a flare but my inflammation markers start to increase.

I ended up not doing the surgery mostly because Actemra works so well for me. It controls the inflammation everywhere including my spine. When I told my rheumatologist the infusions worked better than the injections, he thought it was interesting. He wondered about infusions versus injections. He said I could keep doing the infusions if I wanted to,

Here is a quote from from this thread from a day or two ago: https://connect.mayoclinic.org/discussion/what-is-the-goal-when-tapering/?pg=1#chv4-comment-stream-header I hope @nopnrose doesn't mind being quoted -

"Actemra has increased my quality of life. I'm on Medicare and it pays for the entire infusion."

I actually know quite a bit about coding and how the system works from 25 years as a physical therapist. Sometimes I forget to apply my knowledge to my own case. As far as coding goes it was not a fun part of my job. Reimbursement depends on the codes used so there was pressure when I admitted a patient to find every last diagnosis that applied and hopefully ones that brought in the most money to the agency, which was nonprofit but struggled to break even!

I was diagnosed with PMR/GCA in July 2024. Started on 60 mg. of prednisone. In early December, I had tapered to 10 mg. Major flare during the holidays and all my initial PMR/GCA symptoms returned. In early January, my inflammatory markers were high. I asked my rheumatologist to order Actemra infusions. Initially, she wanted to order Kevzara, but my Part D insurance doesn't cover it. She ordered the infusions and I get them every 4 weeks. I have had a huge improvement in my health.

To answer your question, Medicare will pay for infusions because they are administered in a 'medical setting'. Medicare had to approve the order, but it only took a week or so. I was getting my infusions at an infusion center in Florida and they were $2600 per dose. If you go the self injection route, you have to deal with Part D and the possible co-pays that come with that.

Ask your rheumie to order Actemra. I don't think you need to chase this down. PMR is stressful enough. You don't need the additional stress in trying to get an answer from someone on the phone (if they even answer the phone).

Don't mind at all, @jeff97! We're all here to help each other out.

The problem is that Actemra is only FDA approved for GCA and not always authorized for treating PMR. Some doctors will assume there is underlying GCA or "presumptive GCA" for people who are diagnosed with PMR. Since there isn't any definitive way to diagnose either PMR or GCA it is mostly diagnosed based on symptoms and presenting characteristics.

A rapid response to prednisone tends to "confirm" the diagnosis of PMR/GCA but that is misleading at best. Most all inflammatory conditions will respond to Prednisone. Other than PMR/GCA, there aren't that many conditions still being treated with "long term" Prednisone because of the side effects of long term use. Until relatively recently, Prednisone was called the "only option" for PMR/GCA so people get left on Prednisone forever sometimes.

Kevzara is FDA approved for PMR but it only comes in an injectable form. I would think Kevzara will have an infusible formulation in the future. However, there needs to be more research submitted to the FDA for an infusible formulation of Kevzara to be FDA approved for PMR.