The last week has been fairly trying.
It started off last week with me eating something that would normally not be a problem, but that obviously was not OK for me to eat so far into the treatment cycle: vegetarian kung pao chicken (i.e. with mushrooms instead of chicken).
Cue gut insanity for the next week. It was painful and exhausting, but I wasn’t scared because I knew that it would settle down with Remicade. That said the fatigue was worse than I’d experienced in years, and I couldn’t work at all for most of the week. Two days before Remicade, I slept 14 hours. The day before, I slept 16 hours and could have slept more. Inflammation takes a lot out of a person.
I was very lucky that the work I was supposed to do this week was reallocated to somebody else because there was no way I could have done it.
In the middle of all this, I got a call from the hospital pharmacy that dispenses my Remicade that the EAP had not approved me for treatment yet, so I might have to pay $4,200 out of pocket in a matter of days. Two days later, and after much phone tag with my Remicade coordinator, my coordinator confirmed that she had been able to arrange compassionate pricing for me from Janssen for the next two cycles; the hope is that the EAP will be able to get through its backlog within the next 2 months. (Janssen would then back-bill the province for the cost of the drug). That said, the last time this happened to me was July 2016, and the EAP backlog back then was 4 months, so I’m still uneasy.
I don’t know how many patients are affected by the backlog this time — probably hundreds. That’s hundreds of people scrambling to figure out how they’ll be able to afford thousands of dollars each, per treatment, on very short notice. Hundreds of people looking into borrowing from friends and family, or maxing out their credit cards, or, at the very least, eating into their savings. And not everyone is going to be covered by compassionate pricing initiatives.
I’m thinking that I should contact the Ombudsman’s office again once I get my energy back. These systemic problems need to be fixed.