Here we go!

After over a two week wait, my drugs are finally here.

So this is what that looks like:

Next to my Lenvima in the picture above is a large container of loperamide (Immodium) that in my mind swells to the size of a barrel, and an anti-nausea drug.

I have not been writing about the wait because there was not much to say. I felt like I was supposed to be all “let’s just enjoy the last X number of days in my old body” “one moment at a time” and all that stuff, but honestly I was more in the mindset of “let’s get on with it” and “where the hell are my drugs?”* (The latter is a feeling, and not to be confused with criticism of any of the healthcare people I’ve interacted with). I have had a bit of anxiety, but only one nightmare, which featured the glossy pamphlet they send you with smiling people and dosage instructions. My conscious self cannot explain how a pamphlet is a vessel for fear in a dream, but there you go.

About a week ago they sent me a free blood pressure monitor, and I’ve been monitoring it each morning to establish a baseline. High blood pressure runs in my family and I’ve been happy not to have it (I credit being a vegetarian for most of my adult life), but it’s a common side effect of the drug.

Since I can’t report any effects yet, let’s talk political economy a bit. Thanks to insurance, possibly an intermediary company or the drug company itself, and possibly also Quebec or Canadian law, I am paying nothing out of pocket. The monthly cost of Lenvima has been given to me as $2500CAD (insurance company) and $6000CAD (intermediary company). In the US, I’ve read figures over $22,000US. On the Facebook group for people with my condition, there is generally positive regard towards the company that makes Lenvima, although there was a short discussion of drugs costs and their implications. As you can imagine, moderators try and keep those spaces as politics-free as possible, which I support.

My experience has been this: in addition to Quebec insurance, I have private insurance. Quebec insurance requires us to use private insurance first for anything that we can, for obvious reasons. The private insurer, Manulife, has a special form I had to locate for prior approval to take Lenvima. I fill it out, give it to my doctor, who fills it out, and then has it faxed to Manulife (the Quebec healthcare system is bizarre or intentional in its continued use of fax machines; I can’t tell).

But wait! There’s more: there are two other intermediaries I’m dealing with. First, there’s the drug company itself or some foundation associated with them. My oncologist referred me to them by filling out a form (and having it faxed), and they contacted me, assigned me a nurse, who took my information, consulted with people about medical questions, and appeared to negotiate directly with the insurance company.

Then there’s the pharmacy here, which is a specialized pharmacy, not my corner pharmacy. They also have a nurse with whom I’m supposed to talk if I have questions, as well as a pharmacist. It’s not the kind of drug that you can get at the corner pharmacy.

Now: why is the drug company–Eisai–providing patient services at all in Canada? I imagine it has something to do with the newness of the drug and getting it approved here, or some kind of deal they are striking with provincial governments,** or some other angle I don’t understand.

So, in sum: the drug is absurdly expensive, I have people outside the normal healthcare system working as intermediaries for me in ways I don’t understand, on top of my oncologist, I have two nurses reachable by phone, and I’m not paying out of pocket.

I’ll take it.

*Also, I am happy that it is a pill and not chemo.
**Note for people outside Canada: it’s a myth that Canada has nationalized healthcare. It is handled at the provincial level, and provinces set their own policies, though to my knowledge healthcare is a right everywhere in Canada.

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