I can’t remember when the news was announced that the first ever drug for PPMS & SPMS has been licenced via Europe around January. The problem for us in the UK is that NICE are holding back Ocrelizumbab from being available to us via prescription or whatever other means to help us.
I’m not exactly au fait with NICE or procedures to receive the drug that has been proved to slow down the constant deterioration for PPMS and SPMS. Other than NICE are not considering the proven good effects, & seem to prefer even more testing!
I followed the MS Society request to notify my local MP (who will receive yet another rise in salary next month to over £76k pa. Fair enough £30k of that will be 40% high rate tax, but then she’ll no doubt claim for every expense. My letter was sent via the Society.
Today, I received a reply from the Rt.Hon m.p. and I was horrified she didn’t even mention my comments! Nor the drug I’d requested her to look into, or the difficulties and pain we all endure daily. I expressed Ocrelizumbab could help us to actually live our life, if NICE agree to release it to the relatively low percentage of SPMS & PPMS. Instead, she wrote (or copy & paste) solely on Cannabis - which I hadn’t even mentioned in my letter to her!
Thankfully, RRMS patients have access to DMDs, infusions, meds et al but this Ocrelizumbab is the FIRST drug proved to slow down the constant damage being caused to our shrinking brains.
I’m angry at the MP’s blatant swerve from my topic to a generalised explanation of the danger of cannabis and clearly stressed Cannabis use is unlawful!! Considering, I never even queried cannabis, but solely Ocrelizumbab, I am quite disgusted with the inefficiency of the St Hon MP and her team of staff not digesting the specific contents of my letter. Rant over!