hannah015 07/02/15
Last reply 3 years ago
Lemtrada petition

Hi all

I had my app today only to find out the hospital I attend has still not had the go ahead for Lemtrada. I have therefore researched doing a petition on number 10 website. I have interest from people who have said they would get involved. I will be posting a link to my petition on here once I have completed it. I just feel that everyone who fits the criteria should be offered this treatment and soon due to the amazing results people are experiencing. I need 100k signatures in order to get this talked about in House of Commons but I am very determined. Not only is this treatment a potential to improve a lot of people’s lives but this would also save the NHS a lot of money in the long run. It was approved by NICE for both these reasons and according to them those that qualify for it should be offered it within 3 months.

So therefore I’m fighting
Anyway hope you all can sign my petition once it’s ready
Thank you all xx

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Anonymous
3 years ago

I’ve been through a similar struggle and may be able to help. Will pm you.


hannah015
3 years ago

Thank you @sandwich


stumbler
3 years ago

@hannah015 , I’ll happily sign it and get what support I can. 😉


brownk
3 years ago

@hannah15 I’ll be happy to sign and help all I can.
I at my neuro on Tuesday and will wait to see what the position is here. Are you on any treatment at the moment Hannah? X


us-emma
3 years ago

Hannah,

I am so upset at this news of more delay. I don’t understand your system of medicine- I guess this is what is referred to as the ‘postal code lottery’?

Did they offer you any treatment in the meantime? I am still working on my comparison of all meds & learning a lot myself. I am trying to condense into one easy to read chart.

I can wholehrearly recommend Tysabri as a placeholder for you but you would want to get a guarantee there would be no washout period between Ty and Lem once it is approved. Ty is out of your system in 2 weeks. So by the time for your next dose you have minimal or no protection at all against MS.

Fight for this- you are helping thousands of others.

Did they give a timeline? I can’t imagine govt approval is ‘quick’ any chance to move into a Lem Friendly municipal?

I would sign your petition but being a US citizen I think it would cause more problems than it was worth. If you have an e-petition I would happily post it to my blog and the private Facebook group for MS “Lemtrada for MS Treatment” or you can join directly, just make a request to join and it will be approved immediately.i don’t have anything to do with them directly but I am a member (I don’t like FB As a rule).

Good luck in your Most Worthy of causes!


Anonymous
3 years ago

@us-emma , I agree that it is a lottery and is the reason many MSers fear the US is headed that way. I would gladly sign any petition that you set up for Hannah. MS has quickly become one of the most expensive diseases to treat due to the effectiveness and incredible expense of the DMDs leading to long lives of patients that require a lifetime of treatment. The insurers here are already trying to deem that many MSers are progressive and assert that they require no DMDs due to in order to avoid the high expense. We already know that the ACA does not cover the newest MS DMDs. I held my breath when I looked up my own insurer’s drug coverage. I won’t relax until my insurer signs off on my prescription later this month.

I agree that Tysabri makes total sense as a place holder. I never heard that Tysabri is out of your system after 2 weeks. That would explain why I always felt a need for early treatment during my Ty days. I oftentimes felt weak and called my neuro and got in after 3 weeks. And yes, I had a major relapse by waiting 90 days after my last infusion to begin a new treatment. I hope Hannah can get Lemtrada ASAP without having to bother with Ty.


m-s-dave
3 years ago

I was offered this too in my annual appointment with my Consultant in Edinburgh last November because my relapse permitting MS is “rapidly evolving”. Was told it would be about 3 months, but that’s about a week away…

Have written to my Consultant to try and determine when I’ll actually get it.
In the mean time, I’ll keep on my fingolomoid.


tigerdes
3 years ago

Hannah get the link up and I’ll do all I can to get as many signatures for you as possible. T


Anonymous
3 years ago

@tigerdes How are you faring post lemtrada?


hannah015
3 years ago

Hey @stumbler, @brownk, @us-emma, @mbrsinc, @m-s-dave @tigerdes

Thank you so much, I have submitted my petition to number 10 just waiting to hear it’s been approved then I will post it on here. I need 100,000 signatures but think I’m up to the challenge, thank you all. I think something needs to be done cause so many people can benefit from this treatment and it will save the nhs a fortune in the long run. Tysabri is over £100k a year per person compared to £57k for Lemtrada which is in full. I just hope it can get all hospitals offering this. It needs to be available for everyone who wishes to have it who fit the NICE guidelines. I was finally offered an alternative tablet on Saturday but I am hoping it won’t come to that as I want Lemtrada like I have been promised many months ago. Stubborn I know 🙂 I think it would be best if anyone who is due Lemtrada writes to there local mp, the only way we will get the treatment we deserve is if we fight. Thanks all xx


tigerdes
3 years ago

@mbrsinc I’m doing fantastically well post lemtrada thanks 🙂 I feel extremely fortunate

https://shift.ms/topic/how-lemtrada-changed-my-life/


graham100
3 years ago

Spoke to my MSnurse today. Asked her about lemtrada. Not a good response. She said No that’s a long way off. There are 2 other drugs before we get that one. And it probably wouldn’t be for you anyway. If we thought it would benefit you we would send you somewear to get it. Fobbed off again.


hannah015
3 years ago

Hey @graham100

Seems like we are all being fobbed off a lot at moment. When NICE approved Lemtrada for MS the guidelines were that it should be offered to everyone suffering with relapsing remitting MS who have active lesions or have suffered 2 or more relapses and this should be provided within 3 months. If this is the case for you I would contact your local mp and the PALS department of your hospital. It’s ridiculous how so many people aren’t offered this treatment as it appears to be improving the quality of life for most people who have received it and will save the nhs millions in the long term. Good luck xx


Anonymous
3 years ago

As it stands NHS England is responsible for most MS DMT costs but this may change. The current review is looking to see if specialist services should remain with NHS England, be collaboratively commissioned between them and CCG’s or transferred fully to CCG’s.

The cynic in me thinks this may be relevant.

I think it will be bad news if responsibility goes to CCG’s as I imagine this will increase the postcode lottery significantly.

I hope I’m wrong on both counts.

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