Actemra: Act 2

Brand new Actemra injection

I had been receiving the Actemra infusion for almost a year until I snapped. 

 Just like clockwork, every 4 weeks, I’d go into the infusion clinic and get hooked up to an IV. An hour and a half each time. If you are a lucky infusion recipient, you will be assigned to a nice clinic with individual suites. Back in New York, I didn’t know how good I had it. I could recline out in my private suite, take a nap with a pillow and blanket and try to make a pleasant time of it.

Here in Philly, I was assigned to a single room just enough to fit 4 recliners. All 4 of us patients would be hooked up to our respective machines and we had one small TV anchored to the wall to look at, tuned to some awful channel. We just sat there in silence. My tipping point came when the guy next to me stared at me the ENTIRE time.

Needless to say, I had had enough. Traveling to the infusions, the pain of having a nurse fish for (and repeatedly blow) my veins, the time lost from work, the difficulty with scheduling AND I have to deal with weirdos?!

There has to be a better way.

I decided that enough was enough and I ran to my favorite search engine for options. If you don’t like a medication you are taking or treatment you are undergoing, for ANY reason, I suggest you do the same. I also talked to my rheumy about treatments other than infusions and she mentioned that Actemra came in an inject-able, “self- administration” option.

Now, I wasn’t a complete stranger to self-injecting, since I am on chronic anti-coagulation therapy (heparin shots, before and after procedures) but I hesitated…even though I had some experience with needles, it wasn’t “good” experience. In fact, it sucked. If you have ever had to receive or give yourself a heparin injection, it burns. A lot. (pro tip: ice packs are your friend) and I’m not even touching the topic of having to stab yourself. I am a self-declared chicken, and proud of it (not really).

My hesitation quickly resolved itself the day I opened up that fateful envelope with a bill from the infusion center for $8,000. What.

Time for the “self-injection” campaign.

 Turns out my new insurance in Philly was covering the administration of the medication, and the clinic cost, but not the medication itself. After talking to about (sing it with me) 4 insurance reps, 3 MA’s and 2 people from the billing office (and a partridge in a pear treeee), I was DONE. In fact, I  wanted to stop the Actemra for good. To hell with it if I’ going to end up in that much debt for just a few infusions. 

Unfortunately, I couldn’t just stop the medication.  Not with all the delicious consequences that come along with not taking the medication that is preventing your immune system from wreaking havoc. But that didn’t matter, because the clinic made the decision for me. I owed $12,000 to them and they canceled all my standing appointments. So I was denied Actemera, I had a huge bill, AND I was starting to flare up again. Shit.

This is where I want to pause my story and give some advice. For most high-cost, brand name medications, there are co-pay assistance programs. I will write about them more extensively in my next post, but they can save your life, mental health and wallet. Fortunately there is an Actemra co-pay program that, if you qualify, will cover a substantial portion of the cost of your medication.

Genentech to the rescue

I spoke to my rheumy, the billing people and my insurance reps again and I found that once I got the cost down of the bill, (thanks to the Actemra Co-Pay card) I could switch to the self-injections, which would end up being cheaper, since the insurance wouldn’t have to pay for administration cost.

Self-injection it is! 

My rheumy put the order in and after waiting some time, I finally received a call from the pharmacy that was shipping it to me. They confirmed my address, the credit card number from the Actemra card, and my copay went down to FIVE DOLLARS. I’d like to mention that Genentech manufactured Actemera and therefore provides the co-pay card that covers the cost, so thanks guys! (Even though the cost of medication and insurance company’s and hospitals fees are ridiculous and they should all go to trial for corruption, fraud, embezzlement, and price-gouging, but yes, thanks!)

Ay, there’s the rub

I have been doing the self-injections for the last 5 weeks and let’s just say I’m glad I don’t live alone. Haha. I ask my hubby to stab me and I inject the rest. It sounds dumb, I know, but it’s not an easy task for me. I have so many bad memories involving needles that it’s left me with a weird complex. But it’s ok, I am doing it for my health. I also notice the effectiveness of the drug. It’s taking me a little longer to get over colds and my wound healing could be a little faster, but my joint pains are getting better, and I haven’t had a flare in at least a month, so yay!

The takeaway here is to be proactive in regards to medications. I’ve changed medications multiple times and although there are so many medications out there that may do great things, the side effects, cost, or mental stress can make it just the wrong one for you. Do your homework, talk to your doctor, call your insurance company and make sure you find the right fit in all aspects. There are too many options for you not to.

Wishing you lots of light and warmth,

Lunabug <3

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