Last reply 4 months ago
MS Warriors vs. NICE update

Hello all, you may remember that me and my brother-in-law met with an MP in Parliament, speaking about how PPMS folk in the U.K. are denied access to Ocrevus, and about how people in different constituencies and local authorities access better or poorer services depending on where they live. Have had a great response from the MP’s office as follows (have left out names):

BEGINNING: (The MP) has now met with the MS Society and has sent the letter to the Secretary of State for Health and Social Care to raise the issue with him.

When he met the MS Society, they mentioned an event that they are holding in Westminster this coming Monday, I’ve included the details below. The MS Society suggested we pass the invite along to (you and the sisters) if you would like to attend. Please do let me know if you would and I’ll let the MS Society know.

(The MP) has also tabled some written questions to the Secretary of State about Ocrelizumab and has applied to hold a debate in December on this issue, I’ll let you know if he is successful in obtaining a debate.

The MS Society also suggested that their comms team would be keen to speak you to understand more about your story and explore whether they might be able to do some media work to keep the pressure up on the Government on this issue. Is this something you’d consider doing? END

So, we may be little people, but we can still keep fighting for our stories to be heard, and to bring attention to both the difficulties and injustices we face. Will keep you all posted x

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4 months ago

Well done you👐👐👐👐
Keep up the good fight.
Wish you all the best.
Keep smiling!

4 months ago

@vixen , power to the people (“Wolfie” Smith, Tooting Popular Front)!

Hmmm, Vixen and Wolfie, revolution must be a vulpine trait……….. 😉

Well done @vixen good stuff! I hope you get results from your good work.

haha. My son got his new Police Cadet uniform the other day so naturally I had to put the beret on. I was Citizen ‘Wolfie’ Smith for that moment!!

4 months ago

Good work @vixen keep it up.
Wrote an email to my MSP about how if you make poor choices in life you get loads of help but if you haven’t made a choice but are unlucky enough to get poorly you are forgotten about, needless to say that was 1 week ago today and still no reply!

4 months ago

Good stuff @vixen. I did the MS society letter to my MP regarding forthcoming meeting; she should be getting quite familiar with my name! Let’s see what the response is. Any positive publicity can only be a good thing x

4 months ago

hi vixen, have been out the loop lately because i have been on holiday in usa but now am back ! remember i did a tv interview with my local tv station , i was thinking of tweeting to the interviewer to update her on where we are , do you think it would be a good idea ?
yours hank

4 months ago

Hi @hank, it’s deffo a good idea. The more we can pressure and bring to the public domain, the better all around. After this mission, my next is to get involved with the inequality of provision, based on postcode, type of MS diagnosis and people with more progressive forms feeling that they’ve been ‘put out to pasture..’. Power to the people…. 🙂

4 months ago

Well done 😁😁😁

4 months ago

This drug (according to research) slows down progression in PPMS by very little. And it has a prohibitive costs at £25k per treatment.
I recommend trying who sell a supplement which is a turbo-charged version of Co-enzyme Q10. I am in week 3 of my first bottle and it has already lessened my symptoms significantly: fatigue, brain fog etc.
The website ships in the UK. No import duties, shipping etc.

4 months ago

Hi @dutchy, you’re right, it doesn’t promise great things, although some folks taking it have said that they actually feel better. My point – and my fight – is that folks with PPMS deserve the right to choose whether or not it’s worth it, given that it’s the only credible medicine developed for PPMS. I’ve also heard positives about MitoQ so I’ll dig a little deeper…..

4 months ago

I was very excited when I heard about this drug for PPMS. It wasn’t specifically developed just for PPMS, though.

And then I was told that NICE had not approved it in the UK for PPMS because it has only as minimal effect on the progression of the disease. Here, it is approved for relapsing remitting MS. In the US it is approved for both forms. In the US it costs $65,000 per year for 1 patient.

There are 80,000 – 100,000 MS patients in this country. 10% have PPMS. That limits the attraction for pharma to find an effective medication to treat PPMS. Also, it is hard with PPMS to determine how effective a particular drug is. With a relapsing form, you may see fewer relapses and you know it’s a good drug.

4 months ago

Hello again @dutchy, my understanding is that NICE argue on grounds of cost, not efficacy. I am on a DMD, Tecfidera, which I take based on my trust in the experts. But, given that I’ve only been diagnosed for two years, the problem is that I can not, or ever, know that it is the Tec that is keeping me steady, or just that my form is not aggressive, which I was told initially. Before I was diagnosed, I had not had an episode for two years. Now, since taking Tec, it’s been nearly two years again . So who can truly tell me that it’s the Tec that is effective?

I am becoming increasingly dismayed by the lack of attention given to PPMS folk, and just don’t understand why people are just left for years and years without referrals, check ups or consultation. Basic monitoring. We all have each other and need to continue supporting one another through campaigning for improved care, ongoing treatment research and fair and equal access to services, and the U.K. has a long way to go with the old postcode lottery. Keep well everyone x

4 months ago

@vixen, I have ppMS and totally agree with your ‘lack of attention’ comment. I’m getting less mobile by the week but one hears little re: research for reasons or cures for ppMS , or RRMS. With so many really young folk being diagnosed …’s a disgrace and shaming in the year 2018. I feel sure there are dedicated researchers out there but MS gets little publicity it seems. Thank god we have this forum. Keep up the good work. xx

4 months ago

I share of the frustration of Vixen and Merfield. And I will never give up fighting for better treatment for all patients.
Copy and paste the above into the browser bar to read what NICE said about ocrelizumab (the official name). High cost, minimal benefit for PPMS patients.
As I have mentioned, I find MitoQ promising, but I am only in my first month. Also consider Biotin (vitamin B7). You can get it on Amazon at 10,000 mcg strength, which is 10 mg. Tests have been done on a limited number of patients, but at 300 mg. Those tests show Biotin may be effective.
Let’s never give up hope.

4 months ago

well done @vixen, raising awareness is important. I’ve been impressed by the versusarthritis adverts which have been on TV for the last couple of weeks, more people will have that than MS obviously but their ad shows how a so called invisible problem can affect function so badly; we can learn from that campaign methinks.
I am not on Twitter but if I had the know how (brain fog prevents me) I’d be tweeting J L Rowling as someone who could help with this issue as she has done so much for MS. And of course another famous person whose mother had it is our PM Mrs May. Might be nice if she would help!

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