They are unconvinced there is enough evidence that it will be ‘cost effective’ for the NHS to offer as a treatment for MS.
What this means is that although it is licensed as a safe and effective medicine for people with MS in the UK (and neurologists can prescribe it), without NICE approval, the NHS is not legally obliged to prescribe it to anyone who could benefit.
On the day I was diagnosed, apart from hearing that I had rapidly-evolving, or highly active MS, all I remember my neurologist saying was that if I had Alemtuzumab, it could potentially halt the disease progression for up to ten years.
At the time, I was having relapse after relapse, each one leaving me weaker than before. I was a mess, physically and mentally. My son was 12 and I feared for both our futures.
And having grown up being aware of my dad’s accelerated MS deterioration and early death from a secondary infection (he was 35), my mind was already made up. I signed up for two infusions, a year apart. I was incredibly fortunate to be in the right place at the right time.
So what’s my verdict? Alemtuzumab has been life-changing. It really did halt my MS in its tracks. I might still have the same symptoms I had before the treatment, but there has been absolutely no progression. No relapses. I still have good days and bad, but I know with certainty that good days will follow the bad.
Before Alemtuzumab, I was never in remission. Life was an endless string of relapses. Since the treatment, I have had the chance to pick up the pieces of my life.
And as for cost-effectiveness, what price a life? Apart from anything else, I now no longer need to contact the MS team on a regular basis. There are no trips to the relapse clinic, no steroids. But most importantly, I can be a real mother again. My son no longer lives in fear and I have the energy (mostly) to be there for him.
(The MS Society will be campaigning for NICE to overturn their decision and a public consultation is open until 9th January 2014)