It will be 4 years this coming March since I’ve been on Ilaris (canakinumab), which is a biologic drug to help calm my immune system and to reduce the intensity of the FMF symptoms (fevers, joint pain, nausea, rashes…). Although it causes me to be immuno-compromised, the fact that I feel marginally better than without it is worth the risk.
I was one of the first patients in Canada to receive the drug. It was officially approved by Health Canada in January 2017 and I got my first dose in March 2017. By the way, it was approved by the FDA (USA) and the EMA (Europe) in 2009 — just to show you how long it can take for Canada to play catch-up.
The price tag of Ilaris is no joke. Each teeny tiny vial of 1ml (150mg) costs $19,412 CAD (~$14,800 USD) and I get two every 4 weeks, so it comes to a whopping $38,824 CAD. I’m privileged I have private insurance which covers 80% of the cost, and a compassionate care program that covers the remain 20%. When applying to my insurance for pre-authorization coverage I was denied on the first go, but Dr Sussman (my immunologist and superhero) wrote a killer letter of support for my appeal and they finally agreed to cover it.
This isn’t true for a lot of patients out there. There’s a lot of us who don’t have coverage for our medications and other treatment options. Those who do have insurance still have the odds against them as the likely wouldn’t approved to cover such an expensive medication anyway. Most people living with rare and chronic conditions are usually on a few medications as part of their treatment plan. It’s a harsh reality when you think about it.
For the first 2ish years, I had to go to Dr Sussman’s office to get a nurse to give me the injections. Then about 2 years ago I took a bad turn and things started declining, especially my mobility, so they started sending a nurse to my house instead. This was a relief because coming up to when I’m due for my next set of shots my symptoms flare up and it can be hard to travel to get the shots.
For the past year I’ve been allowed to inject myself without a nurse having to come over and I was so excited. It felt like I could be in charge of this one thing; to be in control of this one thing each month. This time I wouldn’t be on anyone else’s clock and could do it in the comfort of my own home. I was formally trained to administer injections and IVs when I worked at a doctor’s office in my teens, so it’s been a piece of cake for me. But that’s not true for everyone.
For example, my mom’s private insurance denied coverage for Ilaris so she is on a medication called Kineret (anakinra) that’s less expensive — still over a grand a month though. For Kineret, you need to inject yourself every single day. So she has to wake up every day and gives herself her Kineret needle, and is rockin’ it at injecting herself. This is a big thing, because unlike me, my dear mama is afraid of needles. It made me realize that if she can do it, many other people can do it too.
Another thing I’ve realized is sometimes we don’t know what we are entitled to as patients until we hear someone else talk about their own experience. I didn’t know I was even allowed to be trained to inject myself until one of my nurses told me she was surprised I wasn’t already doing it on my own. I was like ‘what? I can do that?’ Sometimes, we’re afraid, and that’s normal and valid too. It may not be for everyone, but it sure was empowering for me.
So for those that are curious, I filmed a three-part VLOG showing you the process I take to give myself the Ilaris injections each month. Maybe it will empower you when it comes to making treatment decisions for yourself.
You can watch each part separately or the whole thing in one — your choice!
Part 1 — How to Transfer the Ilaris
Let’s get started by prepping our workspace, making sure the area is clean and disruption free.
Once you have a clear area to work with, the next step is to transfer the Ilaris from the teeny tiny bottle into the needle vial.
Part 2 — How to Prep the Needle
Now that we have the Ilaris ready we need to get the needle ready to inject into our thigh (or belly).
The first step to get there is to change needle heads.
Then we have to remove as many air bubbles as possible.
And begin prepping the injection site area to make sure it’s nice and clean.
Part 3 — How to Inject
The final steps are to thoroughly disinfect injection area.
From there, we’re ready to inject the Ilaris — take your time it’s quite viscous!
The aftercare is quite simple. Put a bandage to cover the injection site, especially if there is a bit of blood (which is totally normal).