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.
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.
Labels: #NewSpeak, Department of Health, NICE, ocrelizumab, PPMS, Primary Progressive MS, protest