#ClinicSpeak & #PoliticalSpeak: why should people with primary progressive MS be treated as 2nd-class citizens?

Will pwPPMS be forced to pay for ocrelizumab privately? #ClinicSpeak #PoliticalSpeak

My blog post yesterday regarding equitable access to healthcare and HSCT generated some lively discussion. One reader asked: 'Any idea when ocrelizumab will be available in Europe for PPMS? It isn't fair that the FDA has approved the drug and we are still waiting and losing brain'. Interestingly, I was asked the same question at the EAN meeting after one of my talks and one of the Roche delegates at the meeting was able to answer the question for me and said it will be available soon.

Even if it ocrelizumab gets licensed 'soon' there will still be many hurdles to get over before it can be used in clinical practice. In the UK it will need to go via NICE and then it has to be vetted by NHS England. I have major concerns that the cost-effective model that will be used for PPMS will not be the same as RRMS, where the comparator is current DMTs and the model is based on incremental costs. For PPMS ocrelizumab will be compared to best supportive care. I therefore anticipate ocrelizumab being available for PPMS in other countries and not the UK. The latter worries me even more; why should English patients be disadvantaged? This discussion also raises the possibility of the worst case scenario, i.e. the EMA deciding not to license ocrelizumab for PPMS. What will happen then? This will mean the the product will be on the market for RRMS and pwPPMS who can afford to pay for it; i.e. the wealthy will get ocrelizumab privately and those who can't afford to pay for it won't be treated. The latter already happens in the NHS with some of the high-cost cancer drugs that have not been NICE-approved. Most HCPs, patients and even politicians find this sort of healthcare inequity abhorrent. This is why the NHS and other socialist healthcare systems are meant to exist; to stop a healthcare lottery based on wealth. 



One of my patients with PPMS who was in the fingolimod PPMS trial has already said to me he can't wait any longer. He asked me about starting rituximab and paying for it privately. He had no idea of the cost of rituximab and so we are now having to explore the possibility of using off-label cladribine. The use of cladribine for the treatment of PPMS is not really backed-up with much data, is really a shot in the dark and is based on the scientific principle that suppressing inflammation will help. 

I have also recently become aware that Roche may be launching a compassionate early access programme for PPMS, which is something I will explore for him and other patients in a similar situation. 

What do you think we should do to make sure pwPPMS get access to ocrelizumab ASAP? Can you please complete the following survey to explore some ideas. If you have any suggestions please don't hesitate to contact me. 


CoI: multiple

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