I am considering giving up working for the NHS. How can I face my patients with active PPMS and tell them we can’t treat their disease because the Department of Health/NHS won’t come to the table with a deal that involves differential pricing of ocrelizumab?
NICE has just said no to ocrelizumab for treating active PPMS on the NHS. Why? The problem is that the price of ocrelizumab has been set for RRMS and this is too expensive for the NHS; i.e. it is not cost-effective for the treatment of PPMS based on its efficacy in PPMS and the fact that ocrelizumab has to be compared to best supportive care (no treatment) for PPMS. In comparison, in RRMS ocrelizumab was compared to all the other DMTs. To address these issues I have been told that Roche agreed to lower the price for ocrelizumab for the PPMS indication so that it would be cost-effective. This would mean that ocrelizumab would need two prices on the NHS books; a more expensive price to treat RRMS and a cheaper price for PPMS. Apparently, the Department of Health is not prepared to go there. Why not? In short, they don’t give a toss about PPMSers. For the DoH and the NHS, this is just another can of worms they want to be kicked into the long grass.
This decision creates inequity; those PPMSer lucky enough to be wealthy and have money will get ocrelizumab privately, those lucky enough to have been in clinical trials will get it from Roche as part of the extension study and those lucky enough to live in another EU country will be on it via their healthcare system. There is a chance the Scottish NHS may say yes, then we would end up with the situation that Scotthish PPMSers will have access to ocrelizumab, but not English PPMSers.
What can we do about it? I think we need to launch a protest campaign that includes the following:
- An open petition; we will need 100,000 signatories to trigger a debate in the house of commons.
- A passive email/letter campaign; each and every one of you who cares about the treatment of PPMS needs to write to your MP to ask for an explanation.
- Street protests; we need to organise a protest and march on the DoH. Do you think they will respond to a 1,000s of MSers, their families and friends outside the DoH’s HQ in Whitehall? We could block Whitehall with wheelchair users.
- We need to media behind the campaign; article after article and TV programmes about the issues raised by this perverse decision. We need the broader public to know about the issues. The implications of the ocrelizumab rejection go far beyond the treatment of a small group of PPMSers.
If any of you want to help please contact me. I need ideas as well.
If this decision was about breast cancer or HIV there would be national protests. The pink and red ribbon brigades would be out in force. Let’s make it an orange ribbon day.
The press response: The Independent, The Telegraph, The MS Trust, The MS Society, ….
CoI: multiple; I sat on the steering committee for the ORATORIO (ocrelizumab in PPMS) trial and I am the principal investigator of the ORATORIO-HAND trial (ocrelizumab in advanced PPMS). I am conflicted up to my eyeballs, but I am also an advocate for my patients. They need me to stick my head above the parapet and fight for them, which is what I am going to do.
To attack this from a different angle, how can we convince the NHS/NICE that it is one disease and that these classifications by stage are irrelevant?
Have you considered going after Roche instead? They could just lower the price for the drug for both RRMS and PPMS. Roche are making more from this drug than they expected: https://www.biopharmadive.com/news/most-impressive-drug-launch-roche-ocrevus-2017/510814/ The NHS has a point about cost-effectiveness, and the limits on health budgets. Paying for this drug here now, means that another drug or operation doesn't get done somewhere else. Hence the need for 'health funders' to use robust health economic modelling on every drug. If the health funders increase their budget every time a drug company asks them to, then the drug company is going to continue to raise the price of the drugs (current and future) and this quickly becomes (has become) unsustainable.Roche needs to demonstrate that ocreluzimab generates the right health outcome for every dollar spent on it (compared to the next best drug that is on NHS's list to be funded). IF Roche can't justify their price (based on health outcomes), then it needs to drop the price, and keep dropping it until it can.
Unfortunately, I am told that Roche have a fiduciary requirement to their shareholders, which is about maximising profits. Lowering the RRMS price puts the pricing structure in Europe at risk, i.e. if the price gets out it will affect the basket price that many EU countries use.
We need the 100k plus people with MS, their family and friends and the wider public to start to support drugs for MS sufferers/.If the LGBTT community can go to the Courts and gain a ruling that Gay men be given a drug, that if they choose to engage in unprotected sex, (a lifestyle choice) will reduce the risk of HIV/AIDS by over 90%, then why are we not out there protesting(with our clinicians) for access to drugs to treat "Our" condition, (not a lifestyle choice, or any other)?
Re PrEP, not only was it a great campaign it was also about the effectiveness of the drug."For people who take 7 PrEP pills per week, their estimated level of (HIV) protection is 99%."Ocrevus is nowhere near that effectiveness level for PPMS.Cost is a big thing, but I guess cost pales into insignificance if the drug is very, very effective at what it does.
Difference they had anti-viral drugs that really worked against AIDs"Treatment has been so successful that in many parts of the world, HIV has become a chronic condition in which progression to AIDS is increasingly rare"https://en.wikipedia.org/wiki/Management_of_HIV/AIDSOcrevus is too expensive for the results it gives..rip-off."The percentage of patients with 12-week confirmed disability progression was 32.9% with ocrelizumab versus 39.3% with placebo"Look at chart below of Ocrevus vs. Placebo..always shocks me..no matter how many times I view it..this is all the fuss is about..http://www.nejm.org/na101/home/literatum/publisher/mms/journals/content/nejm/2017/nejm_2017.376.issue-3/nejmoa1606468/20180122/images/img_large/nejmoa1606468_f1.jpeghttps://www.nejm.org/doi/full/10.1056/NEJMoa1606468
Homies,you got this all wrong.The gay community was creative as a mo-fo. They approached their campaign like promoting the next Madonna album. Heck, their community members did promote every Madonna album, thus they just transferred their skills to the betterment of health equity for their community. They had money and contacts.You lot ain't got jack. This campaign has no hope. Also, this DMT is no golden apple.
Re: "Also, this DMT is no golden apple."May be not, but it is a start and the base of a platform of treatments on top of which we hope to add neuroprotective, remyelination and neuro-restorative agents. Not having the base of the pyramid in place makes modifying more advanced MS difficult.
Giving up your NHS work is unlikely to help. You need your position to influence the NHS and DoH.
The effort that it takes to fight against the machine (NHS) is taking its toll. I am not the only one who has NHS burnout; it is endemic amongst my peers.
JK Rowling has been a very helpful and passionate campaigner for MS, with a well publicised, personal interest in the disease. She is has a massive following on social media and is forthright on the matters she cares about. Surely if she was contacted directly by Professor Giovanni and other specialists she would be willing to listen and help.
She has avoided ProfGs so far
JK Rowling has never returned my emails, tweets or acknowledged my letters. I am not expecting her to engage with us; she has something against England and the English.
Surely the blame lies with the scientists / researchers who keep coming up with the ideas for therapies for treating progressive / advanced MS and the ideas never pan out. ocrelizumab only works in a small proportion of PPMSers and even in those has minimal impact. The outcomes PPMSers want is to stop the disease in its tracks, not slow it down a teeny weeny bit. I won't be grateful for being able to brush my teeth for a extra 3 months compared to a PPMSer denied the treatment. I'm also fed up with the burden being placed on MSers to protest etc. We have enough of our plate and (i) we are not experts in treatment and (ii) we are not paid (unlike researchers, neurologists, Profs etc.). Send a letter to the PM (her mother died of MS in her early 50s) signed by the top 10 MS neurologists (Giovannoni, Coles, Scolding….) – you will see them at ECTRIMS next month. This will have more impact than a bunch of MSers in their wheelchairs clogging up Whitehall. Rather than rant Prof G, put your energy into the other bits of the pyramid – neuro-protection and neuro-restoration.
Re: "I won't be grateful for being able to brush my teeth for a extra 3 months compared to a PPMSer denied the treatment."The long term modeling of ocrelizumab's efficacy on upper limb function indicates that it will delay you losing your upper limb and hand function by somewhere between 8 to 9 years. The drug is twice as effective on upper limb function than lower limb function; for legs function the delay to needing a wheelchair is only 4-5 years.
Please, please don't give up working for the NHS. Us MSers NEED YOU to carry on fighting from within!!! Don't give up on us.Fighting, petitions, marching is all really helpful. Hang in there!
Stay in NHS. Get your colleagues to only give rrms diagnosis. Then treat the ppms people. I admire your stance and thank u on behalf of us MS patients.
This is happening already; the Swedes were the first to show that the proportion of pwMS being diagnosed as having PPMS is falling rapidly. Neurologists and pwMS learn very quickly how to game the system.
Whew! I know I am a bit of a "GG boy" and I can see some validity in some of the counter arguments. I also see the vertical relationship between your eyebrows and conflict.Having said all that, what can I do from here in Australia? So much is online now and I used to live in England and I have relatives in England.BTW for a long time I have been meaning to mention that my very favourite author is Andre Brink
Re: "BTW for a long time I have been meaning to mention that my very favourite author is Andre Brink."Yes, I am also a fan of Andre Brink; my favourite novel of his is a 'Dry White Season' that I read in high school. If you like Andre Brink what do you think of JM Coetzee? As far as South African authors go he is the more celebrated of the two.
In November 2014, Coetzee was honoured with a three-day academic conference entitled "JM Coetzee in the World", held in his adopted city of Adelaide. It was described as "the culmination of an enormous collaborative effort and the first event of its kind in Australia" and "a reflection of the deep esteem in which John Coetzee is held by Australian academia".
Some say JM Coetzee is the 'most decorated' living English language author alive. His books are hauntingly beautiful and being a fellow South African makes them all the more poignant.
Then there is my favourite South African book written by Alan Paton, 'Cry the beloved country'.
Because I forgot to click on Notify me
I forgot to press Notify
While I want to acknowledge your frustration Prof G with the NHS and the current political climate/slow arse foot dragging practitioners HOWEVER you are a force for good in the system. Rest if you need to but don’t quit
Prof G, what about getting the pwMS who have had TV and media exposure to come together and be part of your campaign idea? This could help, as the public might recognise their faces and what they do. Once the campaign is set up see if they can be interviewed on ITV's Good Morning Britain programme and discuss the campaign. Such as Trishna, who was part of the People's Strictly.
So many negative comments. I'll march, sign petitions etc. I'll help in any way I can. This is our future we're fighting for.
Thanks for this Gavin – here at the MS Society we are incredibly disappointed by this news too and want to do everything we can to ensure everyone who could benefit from the drug is able to do so on the NHS. We launched a petition yesterday, calling on NICE, NHS England and Roche to come together to find a way forward.The petition is available here: mssociety.org.uk/speakup-ms There are examples where different prices have been adopted for different indications in other condition areas (namely oncology), suggesting there is enough flexibility within the current system to allow this to happen. We’d love readers of your blog to sign and share the petition – nearly 9000 people have signed in just one day.
Are you able to share the relevant cost/price information with us? How much does it cost someone to buy Ocrelizumab treatment privately? How much does Roche charge the NHS for Ocrelizumab for RRMS and how much were they proposing for PPMS? It is hard to make an informed judgment on any of this without these facts.
Another sad day for PWMS with the (un)NICE decision and its long term impacts.I've already signed the MSSociety petition, e-mailed my MP with stern words and asking for a response outlining their actions, and am ready to come to London and protest. A blue badge parking log-jam around Whitehall and wheelchair protests would make an spectacle. Bring it on…..