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rachaellouise
2 months ago

@stumbler – Ive signed it and not giving a “toss” as gavin givonni puts it is not right!!! and this makes me angry and sad!! very sad!!
Others give a “toss” though we are not all the samexx


peterfrancis
2 months ago

Disappointing to say the least.

For what reasons have they declined it?… Cost I expect.


vixen
2 months ago

Exactly that, cost. What ridiculousness. I expect a personal response from NICE in reply to the objection I sent as part of their consultation. I asked them to tell me what costs they predict as being the lifetime care projection for caring for someone with PPMS, as opposed to the annual cost of Ocrevus. We need to fight, team warriors…..


pug1
2 months ago

Signed the petition via the ms society, via their e-mail this afternoon.
Agree with vixen we need to fight!!


vixen
2 months ago

Here’s how it is. Nobody except us really understands what it is like, to wake up every morning and prepare to do battle. It’s monotonous, it’s boring and it’s painful. And it’s for life. And that sucks. For a group of people who do not have MS, to take the decision that those with PPMS don’t deserve a shot at a reprieve, just doesn’t make sense. I mean, Ocrevus costs the same as my Tecfidera! How does that square up? Yes we need to fight. For ourselves and for each other. Because we know what it feels like to be us. I hope everyone sends the link to everyone they know xx


londonlad
2 months ago

Thanks stumbler

I’ve signed it.

I’m very fortunate that Professor Gionavonni is my Neuro. I admire him, and all those who work endlessly to help those of us with this condition.

I have see his genuine desire to help me, and sincerity in the work he does. I have no hesitation to take his advice knowing it’s because he has first-hand witnessed the worst of this condition. What it can do, when left untreated, and how we all need to support this petition, for those who are being denied treatment at this time.

I feel so lucky to be in a country where I am given access to FREE treatment. This goes against what the NHS does and stands for.
It’s not fair to not allow someone to be denied a chance of slowing down the condition. This is plain and simply wrong.

It’s the very reason why Gavin and his team are so adamant to say that MS is one disease, just at different stages and points of time. To remove this bullshit labelling that allows this type of thing to happen.

I am very sorry for with my rant, but this really angers and upsets me.

Please sign the petition, if you have 30 seconds.


highlander
2 months ago

Job done,l
My Neuro has me down as just having MS I know what he’d like to call it but …
If you just have MS that leaves the possibility for a chance or words to that effect


rsloan89
2 months ago

Rachel interviewed Prof G about this today. This is a playlist of the vids produced:

He mentioned that anyone angry at the unfairness should write to their MP, so we drafted up a template with him…

https://goo.gl/K2kxg3


seanachai
2 months ago

NICE make the decision but they can easily made look like the enemy by Pharma…

https://neuroimmunology.wordpress.com/2011/03/27/the-shameful-story-of-rituximab-in-multiple-sclerosis/

the phrase money for old rope comes to mind…. its all well asking for money for old rope but asking arm and leg…

Also bear in mind people interested in Ocrevus might want to consider Rituximab… it is used in many countries… and can be used off label…

I would encourage people to read all the data on both Ocrevus and Rituximab…. it can be argued Rituximab has a better track record….

Not justifying the NICE result…. I was rather hoping they would approve… but this particular drug and its history have form…


watsoncraig
2 months ago

It gets licensed but due to cost not prescribed. Hhhhmmm, something wrong there. I read yesterday that a guy got a new willy on the NHS and folk get sex changes on the NHS, but PPMSrs can’t even see if this will slow down the progression.

Its not a cure but the best shot and only thing available but never mind, people who make choices can get treatment but not us


seanachai
2 months ago

a “new” package vs MS…. thats a tough choice @watsoncraig

guess it depends in part whats wrong with the “old” package


watsoncraig
2 months ago

There is no “old” package for PPMS (according to my nuero) so this would have been worth a try


mermaidia11
2 months ago

As usual, I beg to differ – obs
Dr Gi has made some sweeping statements; unsubstantiated and unfair. “Rich people will still be able to get it ?!”.. is misleadin and suggestive it works; which it doesn’t, or am I missing a trick?

He isn’t the Oracle and NICE are trying to protect the NHS from being raped, as well as us from dying.

This drug has killed seven people and withdrawn from treatment of rheumatoid arthritis!

it hasn’t been trialled properly and thoroughly on SP patients. How could it have been?! The good research @seanchai provides evidence….

“But a patient died on the ocrelizumab arm from an unexpected “systemic inflammatory syndrome”. That could be chance and still hope larger studies to be assured… but….

Several rheumatoid arthritis trials with ocrelizumab have been terminated because “the overall benefit to risk profile of ocrelizumab was not favorable” what it really means that 7 patients died unexpectedly in the high ocrelizumab dose arms of the trials.”

And as for Cladribine:

“Phase III trial testing cladribine in multiple sclerosis were published in the New England Journal of Medicine the same day that fingolimod results were reported. Despite a similar effectiveness compared to fingolimod, the increased frequency of neoplasms, severe infections and deaths compared to placebo, led to negative reports of FDA and EMEA and was not approved.
Profile: Cladribine is a chemotherapeutic drug that is used in a rare leukemia. It’s a purine analog, so it interferes in DNA synthesis. Usually cells can metabolize it easily, but not blood cells, so it acts as a cytotoxic drug in those cells.”

Sorry, but I’d be more upset if NICE had agreed to ocrelizumab

We need to fight for an actual cure – like most “insurance policies” nowadays; they ain’t worth the paper they are written on …


lightning87
2 months ago

I’ve signed the petition x


bullman
2 months ago

@stumbler
Signed


vixen
2 months ago

My views are clear from my posts above. However, agree or disagree, our PPMS brothers and sisters at the very least deserve the chance to make their own decision given the choice. As they did with RRMS, NICE need to reverse their cost-based decision. Or. They need to share with us all the formula they have used to calculate that the lifelong cost of medical care for PPMS folk as being less than the cost of Ocrevus. Hmmmm, don’t think so…..


mermaidia11
2 months ago

@vixen, you’re a star, so please don’t take this personally, but Erm this isn’t primarily a cost decision, it is a safety decision. That’s why NICE didn’t approve it – see link from seanchai?

As above, 7 people died while trialing it for rheumatoid arthritis! They didn’t even finish the trial.

Please direct me to a 20+year long study on progressive patients?
No ?

I’m secondary progressive, live independently, (diagnosed at 21, now 44) despite the daily and numerous risks… and still eat well and exercise, while running a large house with two demanding teens.

It’s very hard, but I wouldn’t compromise my immune system, quality of life or length of life by ingesting this stuff, while simultaneously draining the NHS.

Show me someone who is cured or showed a significant improvement, and I’ll happily sign the petition

But Good luck to those who do


vixen
2 months ago

Hello @mermaidia11, I get that completely. I am not PPMS myself, but I really just believe that PPMS folk should at least have the choice, as they do in the US, Canada and Europe. I take Tecfidera, and there have been complications, including deaths reported with taking that too. But it’s a risk on balance which I’ve chosen to take. People have died taking paracetamol. All drugs have risks. I get that too about draining the NHS. But my point re: Ocrevus is that in their consultation document, they said that Ocrevus wasn’t favourable compared to the cost longer term for PPMS patients. To make this claim, they would then have to let us know what their projected cost is for the lifelong care of PPMS patients without Ocrevus, and they can’t possibly. I am RRMS, have a long list of medications, including Ocrevus for which I am eligible. My sister is younger than me, has young kids, has PPMS and it’s so unfair that she can’t access any DMD. The NHS is prepared to fund me for Ocrevus, but not my little sister. That’s not ethical by any standards. It’s like saying that I’m worth an investment but she isn’t. Hey ho, at the very least, this latest development has opened intelligent debate, and differing opinions are what keep sites this this balanced and informative. Respect to all the posters and readers x


robb
2 months ago

Thanks i’ve signed it


fxms
2 months ago

I’m not from the UK, but I work in the pharma/biotech industry and have the impression this is a strategy by NICE to push the price down.

Roche (Genentech in the US) might have taken NHS coverage for granted in PPMS, being that Ocrevus is an orphan drug for that indication.

As a PPMSer myself, I understand that the dismay for this piece of news. However, I also understand it is their job to regulate on cost-effectiveness, and not just effectiveness. For us patients, who need these medications, every approved medication would be cost-effective if we need them. We judge the value of the medicine from other perspective. The NHS has limited resources and has to maximize their utility.

Having said this, i’m pretty sure Ocrevus will be re-evaluated (after Roche proposes a new pricing scheme) and recommended for inclusion into NHS coverage. 🙂 !!!

(Just FYI, this has already happened with Merck’s Erbitux (cetuximab) for RAS wild type mCRC and head and neck cancer and BMS’s Opdivo (nivolumab) for lung cancer and urothelial carcinoma. Pharmacoeconomics…)


fxms
2 months ago

Also, I forgot to point out that this situation happened with Ocrevus for RRMS!!

https://www.ms-uk.org/nice-makes-u-turn-and-approves-ocrelizumab-relapsing-remitting-ms-patients


vixen
2 months ago

Thanks for this post @fxms giving another take on the issue. We can continue to hope….


stumbler
2 months ago

@fxms , Roche and NICE have already negotiated and a reduced price for PPMS patients has been tabled by Roche, but this has also been rejected………… 🙁


mermaidia11
2 months ago

@vixen thanks love and yes I get it from your perspective too.
And you obviously understand what it’s like to be progressive, with the situation with your sister, for which I am deeply sorry for Chick.

Yes. It’s excellent that lots have expressed their views, thanks to @fxms etc and for @stumbler for starting the debate.

I guess I’m coming at it from a quality of life perspective – and ocrevus is harsh. The paracetamol analogy is, with respect; like comparing water to vodka.

Infection:
◦ OCREVUS increases your risk of getting upper respiratory tract infections, lower respiratory tract infections, skin infections, and herpes infections. Tell your healthcare provider if you have an infection or have any of the following signs of infection including fever, chills, a cough that does not go away, or signs of herpes (such as cold sores, shingles, or genital sores). These signs can happen during treatment or after you have received your last dose of OCREVUS. If you have an active infection, your healthcare provider should delay your treatment with OCREVUS until your infection is gone.
◦ Progressive Multifocal Leukoencephalopathy (PML)
PML may happen with OCREVUS. PML is a rare brain infection that usually leads to death or severe disability. Tell your healthcare provider right away if you have any new or worsening neurologic signs or symptoms. These may include problems with thinking, balance, eyesight, weakness on 1 side of your body, strength, or using your arms or legs.
◦ Hepatitis B virus (HBV) reactivation: Before starting treatment with OCREVUS, your healthcare provider will do blood tests to check for hepatitis B viral infection. If you have ever had hepatitis B virus infection, the hepatitis B virus may become active again during or after treatment with OCREVUS. Hepatitis B virus becoming active again (called reactivation) may cause serious liver problems including liver failure or death. Your healthcare provider will monitor you if you are at risk for hepatitis B virus reactivation during treatment and after you stop receiving OCREVUS.
◦ Weakened immune system: OCREVUS taken before or after other medicines that weaken the immune system could increase your risk of getting infections.

They have only tested it on less than 300 progressives and it caused more way trouble than it solved . Much more. See above.

Whereas paracetamol is sold in supermarkets and is only toxic when too much is taken.

It’s especially important to prevent infection, when you are progressive, a weak immune system is better than none I’m my view, from recent experiences.

Pneumonia has almost nearly killed me – as I havnt got the chest muscles to cough, so a simple cuppa going down the wrong way, became asphyxiation pneumonia
Avoiding hospital is my mission now , not taking drugs that will make me feel worse, without curing me!

Or making a lot of money for the drug companies, by pressurising the nhs to pay exorbitant amounts for the stuff.
50k a year? Money better spent on research, not using us all as guinea pigs for cheap drugs , old repackaged rubbish is my view.

I know it must be heart breaking to see your sister suffer, I can’t recommend ldn highly enough, she should perhaps try it.

Take care darlings and keep up the good work x


fxms
1 month ago

@stumbler too bad this is costing UK PPMSers time off treatment. I remain hopeful that the NHS and Roche will reach an agreement.

This drug has more than one indication with the same dosing scheme. Can this be the problem?

“In order to make the drug cost-effective Roche had offered a further discount for PPMS, but NHS rules prohibit the same drug being bought at two different rates.” Taken from: https://www.independent.co.uk/news/health/multiple-sclerosis-ms-wheelchair-progressive-nhs-drug-symptoms-nice-ocrelizumab-a8528071.html

Is there anything being done on Roche’s side?


stumbler
1 month ago

@fxms , I’m not sure what more Roche can do. It’s now becoming a bit of a “bugger’s muddle”.

If NICE had agreed a differential pricing for PPMS, how would that be managed? And, would there be a temptation to “cook the books”…….

Surely now, any Neuro that wanted Ocrevus for a PPMS patient, would ensure that the diagnosis didn’t progress from RRMS?

Or, are the NHS, being put under intense budgetary pressure, and even Neuros themselves, with the pressure delegated down from central control, quietly happy with this decision?

Like I say, a muddle……..


vixen
1 month ago

Agreed @stumbler. The bad person in me wants to remind us all about the extra billions promised to the NHS following the calamitous Brexit drive…..can’t wait for that to arrive, and to see how all that xtra money is spent and benefits us all. Not. 🙁


hank
1 month ago

hi stumbler looks like we are upset by this and have all signed petition, but i have also tried to push it further , dont know if it will do any good but so far i have:-

emailed my M.P.
emailed P.M.
emailed Health Minister Matt Hancock
emailed my local T.V. station to see if i can get any publicity
emailed C.E.O. of Roche
as i say dont know if it will do any good ,but it makes me feel as though i am doing something !
hank


stumbler
1 month ago

@hank , we can but make a noise.

Although, even if Ocrevus does get approved for PPMS, I can see it only being available to early onset PPMS, i.e. those with sufficient neuronal reserve to make a difference…… 😕


hank
1 month ago

hi stumbler, just to let you know, local t.v. just emailed me back asking me if i would be willing to appear on camera , i have said yes so it sounds promising but we will see
hank


stumbler
1 month ago

@hank , if this progresses, you might want to inform the MS Society.


hank
1 month ago

ok stumbler will do if things happen

hank


hank
1 month ago

hi stumbler , just to keep you in the picture, just had a phone call from T.V. people they have pencilled in to come and see me on sun morning of this week , they said they will speak to M.S. society , N.I.C.E. and Roche before hand

yours hank


vixen
1 month ago

Good luck @hank, well done for flying the flag. My bro-in-law has been invited to meet his MP whom he wrote to for help. Keep fighting the fight x


hank
1 month ago

thanks vixen, we need to keep trying, received a nice email from Roche, saying ” Roche has offered a significant discount for P.P.M.S. , but unfortunately N.I.C.E. has been unable to consider it. This is because of a fundamental lack of flexibility in the system for neurology treatments. We are absolutely commited to working with the M.S. community, N.I.C.E. , N.H.S. England and the Dept of Health to find a solution to this situation for people with early P.P.M.S. . We will continue to be fully flexible in our negootiations, and are acutely aware of the urgency.”
best wishes hank


hank
1 month ago

hi stumbler just to let you know the interview with tyne tees goes out tonight sunday at 6.45pm on itv local news
hank


stumbler
1 month ago

@hank , I’m sure it will appear online shortly afterwards, catch-up or something.

Let us know if you find a link.


lynb
1 month ago

@stumbler, I’ve signed it. Lx

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