I had a clinic appointment with my consultant today (yesterday if you're reading this today. Assuming today is Friday, that is) I think I'll start again...
I had a clinic appointment with my consultant during the week. His name is Professor Giovannoni, and he's a part of the Barts and the London school of Medicine and Dentistry.
I was expecting to get my official diagnosis of secondary progressive Multiple sclerosis (SPMS) and subsequently have Gilenya whipped away from me as it isn't considered to be cost effective to SPMSers. I wasn't phased at the thought of this. I've been expecting the diagnosis for 5 or 6 years now. Seriously, that's how long my MS has been progressing now, with the odd relapse here and there. 'Progressively Relapsing' I got told a while back. That's a new one, eh?
I was going to ask him about getting on the Laquinimod trial for people that are SPMS or maybe get some Novantrone (Mitroxantrone), which has been given to people who are borderline secondary progressive, but without that diagnosis, it was pointless asking. I still did though.
What to do now then? I did what I always do when I see him, I asked him for some Campath! It's name had been changed to Alemtuzumab after a few tweaks and it has since been rebranded as Lemtrada since it got its Food and Drug Agency (FDA) (for the US) and European Medical Licence (EMA) licences. Despite its licence, the National Institute of Health and Care Excellence (NICE) won't touch it with a barge pole over the cost. This decision is under appeal. That means I can't have that either.
All this means that until NICE and Genzyme (the makers of Campath) agree on a more suitable price; or until my diagnosis of 'Highly Active Progressively Ralapsing Borderline Secondary Progressive Multiple Sclerosis' turns into 'full blown SPMS, I shall continue to take Gilenya and write this weekly rubbish.
As I've been enjoying acronyms this week, I've got one more for you before I go: HAPRBSPMS. That's my very own self titled MS diagnosis from above. It's what they have told me over the years. Are youHAPRBSPMS too?
Happy Christmas, everyone.
Dan
Hi Dan. Is it your impression that prof. Giovannoni stands favorable towards Campath as treatment for you if Nice would approve a more favorable price? I still don't know what my neuro thinks about it (my appointment with him is deferred a couple of weeks (will let you know).
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Bert
Hi Bert. He told me that if and when NICE is prepared to take on the cost of this treatment, he would be happy to give it to me, or anyone that fits the criteria.
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