A NICE Setback

AlemtuzumabLast week NICE (The National Institute for Health and Care Excellence) gave their initial verdict on Alemtuzumab (Lemtrada).

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)

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10 thoughts on “A NICE Setback

  1. Ugh, what a setback indeed. I know how much Alemtuzumab (really, couldn’t they have named it something easier to spell?!) has meant for you. Hoping the MS Society is successful in having that decision overturned…

    • stumbling in flats says:

      Isn’t it?? I’m so annoyed, angry and upset. I want everyone to have access to this. And you’re absolutely right – who decided to call it Alemtuzumab??? How about Miracle or something?

  2. Samantha Thompson says:

    This has left me feeling very upset.
    Surely the cost of this treatment is less than a patient constantly needing other resources and treatment? I was so hopeful that after reading your positive experiences that if I need this, it would be available (and for others too of course!)
    Sam xx

    • stumbling in flats says:

      Couldn’t agree more Sam. I’m devastated.
      I’m totally with you – if I had chosen Tysabri, I would be going to the neuro ward every month forever. Can’t be cheap? I’d be on the phone to the MS nurses all the time, would quite possibly end up needing some sort of social care package, give up work entirely, etc. Isn’t that expensive when compared to two Campath infusions???
      The fight continues – it doesn’t stop here.

  3. great :/ so that probably means that it will be denied up here too :/ it would help so many people, and you are right. it will save money in the long run, no steroids, less trips to the hospital etc.
    I would jump at the chance to have this treatment, yes they are side effects, but the pros way out way the cons.

    • stumbling in flats says:

      Absolutely. For me, there were two main side effects. First, there is a one in three chance of developing thyroid problems – totally treatable. Second, you have to go for a blood test every month for five years. Can be done at local doctors surgery. So really, so much easier and cheaper than the current alternatives.
      I’m not impressed. Not at all.

  4. Sally says:

    Was just off googling around after I read your post. It’s not a definite no yet. NICE have asked Sanofi for more info on a couple of gaps in their provided information. Once Sanofi do that it could be ok. In Scotland the medical agency is still at the consultative stage until January, so no decision has been taken yet there. On past decisions I would be more optimistic that the Scottish medecines agency would approve it. Not total doom and gloom ( yet, anyway). Anyway.. COFFEE TIME!

    • stumbling in flats says:

      Fingers crossed! Just wish it was sooner rather than later. Alemtuzumab is best started as soon as possible after being diagnosed.
      Will be keeping an eye on developments!

  5. Jenny says:

    Not sure if I’d qualify for this as I’m currently on Tysabri but given the chance, I’d much rather have two infusions, a year apart and be done with it.

    The nurses at the treatment unit are lovely and I feel lucky to be on such an effective drug but the four weeks between sessions seem to fly by. Then there’s appointments with the nurse or neuro every 3 months cos I’m JC positive and regular MRI’s, it’s great I’m being so closely monitored but it must be a huge drain on hospital resources – I feel like it’s my second home!

    • stumbling in flats says:

      Tysabri was the second option my neuro gave me, but like you I thought it would be too much, every single month. I was beyond lucky to be under a hospital that offered Campath on a compassionate basis. It just seemed the quickest way to get back on my feet. I want to see Campath approved by NICE – the sooner the better.

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