First, a quick update: I did make my chicken, brussels sprouts and potatoes last night, and they were delicious. And I made my chicken and avocado sandwich to bring to work today, too. So far, so good. (Though I still didn't really sleep.)
This week I'm tackling the massive red-tape-and-paperwork kerfuffle that is the Trillium Drug Program. This is the provincial government assistance program that covers the cost of medication for people without adequate drug plans, which will be me in September when I start school again. In many ways, it's a great program, but unfortunately for me, Enbrel is not on the list of drugs that are automatically covered. Thus the red tape and paperwork.
If you've been reading my blog for a while, you'll know that the last time I did this it took almost a year and I ended up going for four pretty awful weeks without Enbrel. They insisted I try a massive dose of mtx (30 mg - barf), Sulfasalazine, and Plaquenil before they'd conceed that I actually needed the drug I'd already been taking for 5 years. I hobbled around the house, asking people to cut my food, button my coat, dial the phone. I was so depressed.
Through all of this, my rheumatologist and her nurse practitioner were amazing. They worked so hard for me and kept in almost daily touch to see how I was feeling off the drug. When I met with my doctor in person after the sixth rejection, I'd never seen her so riled up. Despite everything, I always knew they had my back, and that made a world of difference.
My relationship with my rheumatologist has been different since then. Although I liked her a great deal before, I feel closer to her now. She's seen me at my absolute worst, and I've seen how far she'll go for her patients.
This time, they're already back on the job and meanwhile have gotten Enbrel's Enliven Services to agree to "bridge" me (provide free Enbrel for the duration of any gap between losing my workplace insurance and getting provincial coverage).
So, I'm a little nervous about starting this whole process again, but I know she's in my corner, and that makes me feel a whole lot better.
6 comments:
Sometimes I'm convinced that medical insurance companies exist solely to make the people they're supposed to be covering absolutely miserable and stomped on. I'm so sorry to hear that this also happens in Canada. It's the pits. And I'm horrified that they left you to suffer for so long, rejecting and rejecting in spite of your clear need for Enbrel. Shame on them.
I'm glad to hear, though, that you're starting in on the battle well in advance -- you already know what's coming. And that your rheumatologist is so truly looking after your best interests. And finally -- the incredible news that the Enbrel maker will actually provide you with the drug should it be needed, for free. Maybe there is a god, after all.
You're so tough, Helen. You inspire me daily. Here's hoping that you're feeling well today -- and GOOD JOB on preparing your nutritious meals ahead. Way to go, grrrrrrrl!
Smiling,
Wren
Let's hope this time things don't take so long (fingers crossed)!
It's absolutely insane what people are made to go through. Always reminds me of the novel Catch 22 – as if common sense and logic don't exist. Hard to believe real life can sometimes be like that.
:) Laurie
P.S. The sandwich sounds great!
Hi Helen,
I’ve been getting caught up on your blog. It’s so good to hear that you’ll be getting your meds while you transition to new coverage. The red tape on these things can be a real hassle and costly to ones health if you have to go off necessary medication.
Sounds like you have a really good rheumatologist and care team to work with. It really makes a difference. Continue the good fight.
That's so great that you have such an excellent team advocating for you, AND i'm glad to hear that you will have the enliven services available to you if there is a gap. Keeping my fingers crossed that it won't be as horrific as last time.
Sara
Thank you for the encouragement, everyone. It's such a relief to know that I'm covered even if I do run into trouble obtaining the Section 8 exception.
It frustrates me that I even have to do this, though - and I know there must be many people who don't have some of the resources I do for whom this is even more difficult. I hope one day this will be easier.
I wish your doctor was my doctor!!!!!
Post a Comment