ProfG are you walking-your-talk or just huffing-and-puffing?

I was asked after my ‘ProfG is fuming‘ blog post from a few weeks ago, if I was walking-my-talk and doing something about NICE’s decision about ocrelizumab for PPMS? Or was I just huffing-and-puffing and doing nothing about it? 

My response was yes; I am walking-my-talk. The following is a summary of some of my activities.

  1. I signed the MS Society’s petition. Did you? 
  2. I penned and managed to get over 90 HCPs to sign an open letter to Professor Dame Sally Davies in the Department of Health  (see below). 
  3. I did an MS Reporters interview with Rachel Horne from Shift.MS. Amazingly these have had more than 10K views in just three weeks (see below). It is the first interview/video I have done that has gone viral. It shows you the power of social networks.
  4. I have helped set-up an MS Academy meeting in early November to discuss variance and inequality in relation to MS Service provision in the NHS. I have little doubt the plight of PPMSers will high on the agenda. The meeting is now fully subscribed.
  5. I am putting to together a group of activated PPMSers to brain-storm, what to do next. I think we need to personalise it, i.e. to get individual stories out there about PPMSers who have been and will be disadvantaged by not having access to treatment. If you want to get involved please drop me an email (bartsmsblog(at) 

Prof G: The problem with off-label prescriptions in multiple sclerosis.

Why should Ocrelizumab cost more for Relapse Remitting MS than for Primary Progressive?

Prof G disagrees with NICE: Ocrelizumab is value for money
Ocrelizumab has been turned down for primary progressive MS in the UK. Why?

Open Letter

Professor Dame Sally Davies
Chief Medical Officer
Department of Health
Room 114, Richmond House
79 Whitehall
London SW1A 2NS

24 September 2018

Dear Dame Sally

Ocrelizumab for the Treatment of Primary Progressive Multiple Sclerosis

We are writing to you as concerned healthcare professionals for help. We are neurologists, nurse specialists and allied healthcare professionals who specialise in multiple sclerosis (MS). Although patients with the relapsing-remitting type of MS have access to many disease-modifying treatments no treatments until now have been licensed for those with the primary progressive type of MS (PPMS). In its final appraisal document [FAD ID938] NICE has not recommended the first available licensed treatment ocrelizumab, for treating early PPMS.

The problem with NICE’s appraisal determination (FAD) is that the price for ocrelizumab had already been set for treating relapsing-remitting MS (RRMS, FAD TA533), but this price was considered not cost-effective for the treatment of PPMS based on its efficacy in the PPMS trial. As there are currently no licensed treatments for PPMS ocrelizumab had to be compared with best supportive care or no treatment. In comparison, when NICE appraised ocrelizumab for RRMS it was compared to all the other licensed disease-modifying therapies (DMTs).

We have been told that Roche had then agreed to lower the price for ocrelizumab so that it would be cost-effective for the PPMS indication. If this was accepted it would mean ocrelizumab having two NHS prices, a higher price for the treatment of RRMS and a lower price for the treatment of PPMS. Apparently, the Department of Health is not prepared to support differential pricing, despite having a mechanism with the blueteq system for tracking prescribing for the PPMS and RRMS indications.

NICE’s decision in association with the Department of Health’s Rules means an irrational decision has been made. It also creates inequity. People with PPMS who are prepared to pay for ocrelizumab privately will be able to receive the therapy, potentially in an NHS institution. Similarly, those who are fortunate may be able to move and be treated with ocrelizumab in another country where ocrelizumab is covered for the PPMS indication as other UK and EU countries have different decision-making processes.

We would appreciate it if you could review the Department of Health’s position on differential pricing as a solution for people with PPMS being treated with ocrelizumab? We are convinced that there must be a solution that will allow our patients with PPMS to be appropriately treated under the NHS.

Despite the pharmaceutical company conceding to the NICE target and the drug receiving a European license, it is now the government who is preventing patients receiving appropriate treatment for their MS simply due to a rule, arguably an irrational rule, created by the Department of Health.

We look forward to hearing from you.

Yours sincerely

Concerned NHS HCPs.

CoI: multiple

19 thoughts on “ProfG are you walking-your-talk or just huffing-and-puffing?”

  1. Did you write a letter to Roche to reduce their prices?Did you offer the fees Roche paid you personally back to the NHS?

    1. Re: "Did you write a letter to Roche to reduce their prices?"Yes I have been lobbying Roche to do just that for sometime and they have agreed to lower the cost of ocrelizumab to make it cost effective for the NHS to treat PPMSers. The problem is the NHS does not have a mechanism to accept the lower price.

    2. ProfG I presume you are British Taxpayer. When you declare your consulting income and pay taxes on it you are paying it back into the NHS. I suspect Anon 6:41 is a cynic who doesn't understand the economics of the modern world.

    3. Good point. Yes, I am a British tax payer and I do pay taxes on all my income. In reality increased economic activity should have a trickle down on the NHS. But will the politicians increase funding of the NHS? I am not sure, the current government seems to be running it into the ground and making the case to change the funding model and/or to semi-privatise it, which is happening rapidly. Your comment about modern economics is a good one I have just finished reading Hans Rosling's book "Factfulness", which is brilliant and an essential read for the planet. Hans Rosling, is one person I thought would have it in for Big Pharma, but he spends a good deal of time explaining the role of pharma plays in broader society and how they can help with improving the world's health. He stresses the point in the book that dividends from Pharma shares were being used to pay his and other pensions in Sweden. Thanks for the support. You may have realised by now that if you blog and stick your head above the parapet you are going to get covered in shit. This has been happening for 9 years now and will continue to happen.

    4. Why don't Roche simply lower the NHS price of Ocrevus to the PPMS threshold, which will allow all people with MS to access it?

    5. I suspect Roche will claim they have a fiduciary duty their shareholders and not the NHS and hence will want to maximise their profits from the NHS. Only 5% of ocrelizumab prescribing will be for PPMS and 95% for RMS. This issue reminds me of the socialist vs. neoliberal debate. Another solution is to get rituximab covered by NHSE for PPMS. I am told that NHSE is currently reviewing this and who knows we may get to use an anti-CD20 for PPMS.

  2. Ocrevus buys some a few years no doubt..but the then what..? Youfade away.Bit repetitive..Woe is us because of the big bad NHS. In England it'scold and fogy like a Dicken's hard Times novel and the govt. servesus Dead Rats for dinner sometimes. They are just trying to manage limited funds in a limited world.

    1. Re: "Ocrevus buys some a few years no doubt..but the then what..? Youfade away."Yes it does buy you time. We estimate 4-5 years longer as a walker, i.e. compared to placebo ocrelizumab treated PPMSers would stay walking longer. In terms of upper limb function the modeling data suggests 8-9 years; i.e. PPMSers on ocrelizumab will stay independent almost a decade longer than those on placebo. The cost of losing your leg and arm function is not trivial ask any MSer who has an EDSS of 7.0 (wheelchair) or 9.0 (loss of arm function).

    2. Re: " ..but the then what..? You fade away.Not necessarily. The ambition is to use ocrelizumab as the base of the pyramid to add-on other DMTs, in particular neuroprotective, remyelination and neurorestorative therapies. Without the anti-inflammatory at the base it is difficult to build the pyramid.

    3. But you don't have the upper layers of the pyramid!!!! You say this all the time, as if it's a given, but it's not!

    4. You have to start somewhere and as for having the upper layers of the pyramid we have agents that have some neuroprotective benefit (albeit not licenced) but because they are trailed in the absense of the base they are not that great.

    5. MD, I appreciate what you're saying, I really do. But an agent which isn't licensed is as good as non-existent to me. They may not be that great, but what I have right now is no agent at all, and that's not great either.

  3. "But you don't have the upper layers of the pyramid!!!!"'s science fiction for now.At least 2 therapies for progressive ms in the pipeline butwon't help all those hitting EDSS 7.0 in the present.

    1. There's probate (and for those of you with that joy yet to come – a process that's complicated, long drawn out, with no proper guidance and not sure when it will end) – it's a good analogy

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