For English PPMSers


“I love deadlines. I like the whooshing sound they make as they fly by” Douglas Adams, Hitchhikers Guide to the Galaxy.

There is one deadline that happened quitely earlier this month. NHS England turned on the blueteq form ocrelizumab treatment for PPMSers living in England; they did at the last possible timepoint dictated by the law. The good news is that the requirements for someone with PPMS to be treated are relatively simple. All that is required from us is the following:

1. Confirmation the patient has a diagnosis of early PPMS with active disease, defined by the appearance of new lesions confirmed by two MRI studies taken at least 6 months apart OR one or more gadolinium enhancing lesions on one MRI over the last three years.

2. EDSS score <= 6.5

3. A decision agreed at an MS multi-disciplinary team (MDT) meeting.

4. Recording of all the above in the patient’s records (for audit purposes).

This has been a long time coming and I want to thank all my colleagues who signed-up to the open letter we sent to the Chief Medical Officer (see below). I suspect the letter may have helped find a funding solution. It is clear that when there is a will there is a way.

I am also beginning to realise that NHSE is actually on the side of the patient and contrary to my previous perceptions NHSE want patients to access effective treatments. The problem is they have limited budgets and are beholden to the Department of Health and the political system of the day.

We may have won one battle, but the war continues. PPMSers in Scotland still have no access to ocrelizumab. How can we live in a country, with a socialist healthcare system, that allows your place of abode to dictate your access to treatment? If there is anything we can do to help PPMSers living in Scotland please let us know.

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

About the author

Prof G

Professor of Neurology, Barts & The London. MS & Preventive Neurology thinker, blogger, runner, vegetable gardener, husband, father, cook and wine & food lover.


    • Not sure, but I will find out. In most cases Wales follows what happens in England. Northern Ireland also usually follows NICE recommendations, soon after a decision is made by NICE. However, the Scots rely on the Scottish Medicines Consortium (SMC), which decides whether a drug should be available on the NHS in Scotland. The last I heard the ocrelizumab application had been withdrawn and has to be resubmitted. I, therefore, think Scottish PPMSers have a long wait ahead of them.

  • Does the NHS have the necessary resources to screen all their PPMS patients for active disease? This may be another hurdle to access ocrelizumab.

    • No we don’t. We have no clinic or infusion unit capacity and our MRI scanners are fully booked. This is the elephant in the room. We need more resources.

  • Do you think English neurologists will behave the same way US neurologists have, by undoing the diagnosis of SPMS in many patients and relabelling them as having PPMS? In the past labelling patients with PPMS as having relapsing-MS allowed them access to treatment, Most of these patients, not surprisingly, have continued to progress.

    • Absolutely. Neurologists tend to do what they can so that their patients can access treatment. You probably know by now that we think #MS_is_1_not_2_or_3_diseases so these arbitrary classifications systems make no sense.

  • Thank goodness that Jeremy Corbyn has pledged that Labour, if elected, will create a publicly-owned company to make cheap versions of medicines the NHS needs but cannot afford. This means that the UK would decree the needs of the people outweighed the interests of an avaricious pharmaceutical company. Big Pharma would get compensation, but nothing like the profits they want.

    I have noticed that Team G have failed to highlight and support this pledge.

    Big Pharma is certainly keeping some mo-fos sweet, brah.

      • Well Ali Diane Abbott is the Shadow Home Secretary so no she won’t be involved. John McDonell and his team (he’s the Shadow Chancellor) will have full accurate figures of all Labour’s policies. But you don’t seem much interested in facts – Diane Abbott is a highly intelligent woman and that includes understanding economic policies (that means sums).

        • I’m sorry, but once I stopped laughing about Abacus being highly intelligent and understanding economic policies I remembered one of the many corkers
          10,000 cops = £300,000 0ver 4 years
          so with logic like that she’ll be able to treat the 100.000 people in UK with MS for about fifty quid a year then?

          • I don’t think this comment is befitting this forum
            1. You have chosen to insult a person who apart from being in the same party had nothing to do with this announcement and the implementation of the policy would not be in her brief – I wonder what your motivation is to insult her?
            2. Plenty of examples of other politicians making gaffes and getting figures wrong inc. previous chancellors and even our beloved PM but you single her out?

            As I’m sure you are aware she was the first black woman to enter parliament and is a history graduate from Cambridge University but obviously she must be thick

            Can we stick to MS?

    • Re: “… create a publicly-owned company to make cheap versions of medicines the NHS..”

      Interestingly this model has been tested with IVIG (intravenous immunoglobulin); the UK blood transfusion service created its own company (state subsidised) that made a cheaper version of IVIG. The latter distorted the market to such an extent that the private manufacturers pulled out of the UK. This led to a massive shortage of IVIG and patients suffered. The UK IVIG supply has never recovered and we lurch from one supply crisis to the next.

      The bottom line is if you manipulate the market it may come back and bite you and the consequences are drug shortages, which do not necessarily lead to cost savings as you are forced to buy urgent supplies and higher prices. I suspect once in government economists (civil servants) will be able to give Jeremy and his colleagues the necessary impartial advice.

  • Thanks for all the hard work Prof G and team – this is really great news, even taking into account the elephant in the room comment above and the ridicolous spatial inequality within the UK -first step but a way to go yet.

    For PW PPMS who are on existing DMT’s, is it worth considing switching to ocrelizumab? For instance, should PW PPMS stay on the off label cladribine treatment at St Barts or is it recommended to consider changing over?

    Probably time to speak to my consultant before my next meeting –

  • The Scottish Medicines Consortium has started its review of ocrelizumab for PPMS for NHSScotland. It will be discussed at a committee meeting later this year, with a decision expected first quarter 2020. The MS Trust is making a submission to the appraisal.

    Brief details here:

    We understand that Roche are working with the NHS in Wales and Northern Ireland but we haven’t heard whether there’s been any progress.

By Prof G



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