#PatientSpeak: I have primary progressive MS ……….

I am preparing myself to let my patients with PPMS down. Are you? #PatientSpeak, #MSBlog #Ocrelizumab

I saw one of my patients the other day who has PPMS. His disability is worsening and clearly wants something done about it. He was very excited about the news that the FDA had licensed ocrelizumab for PPMS and wanted to know when ocrelizumab would be available under the NHS. I explained to him that ocrelizumab had yet to be licensed by the EMA and as the EMA tends to be more conservative than the FDA it wasn’t certain by any means that it would be licensed in Europe for PPMS.  Even if ocrelizumab is licensed for PPMS, I suspect the EMA won’t give it as broad a label as the FDA has done and may limit it to a particular population of pwPPMS. If this happens I informed this patient he may fall outside of the licensed indication, for example his PPMS may not be active enough. 

In addition, if and when the EMA licenses ocrelizumab for PPMS then NICE has to green-light it for use in the NHS. The latter may be a problem, particularly if ocrelizumab is priced to be cost-effective for RRMS. At the RRMS price NICE will need to compare it to best supportive care (no DMT) for PPMS and it is unlikely to be cost-effective using this comparator. I have been arguing for sometime now that this may be the time for Pharma to explore differential pricing and charge the NHS less when ocrelizumab is prescribed for PPMS. 

When I told this patient about the various hurdles that will need to be overcome for me to prescribe ocrelizumab for him he was very disappointed, so I asked him to put something down in words to start a conversation with other pwPPMS who live in Europe. 

Please note that Mark has given me permission to publish his name. In fact Mark sits on the Barts-MS Advisory Group and wrote a blog post on this in December 2015

A patient-with-PPMS’s Perspective on Ocrelizumab

“Some 4 months after I was diagnosed with PPMS in May 2008, I remember speaking to a man who had had MS for a number of years and he said that I would be one of the lucky ones – there would be treatment for PPMS in the next ten years or so. I have always remembered this but of course with less and less conviction as the years have gone by. Now I think I will be just another of the countless unlucky ones, there will be no treatment for me.

So when Ocrelizumab was announced as a possible treatment for PPMS I was overjoyed and thought, you know, maybe he was indeed correct. However, as ever with this disease any joy is always mixed with disappointment and so it was when I discovered that I was too old to be considered for the trial – I was 57. This was a bitter disappointment as I do not consider myself to be old, let alone too old. Indeed I have taken part in 3 trials since being diagnosed, I am generally fit, look after myself, lost weight, go to the physio twice weekly and maintain a good positive outlook. I do “my bit” but, there you are, I am too old.

Following the Ocrelizumab trials I like others with PPMS are very keen for the drug to licensed as currently it is our only hope. I understand that whilst it is not particularly effective where MS has taken a hold – eg on the lower limbs, it is effective on the upper limbs. For this reason alone it should be prescribed as our upper limbs must be saved they act as our legs by allowing us to use a stick and maintain some independence by using mobility scooters and other aids. Once our arms are as stiff as our legs we are effectively quadriplegic – if that can be avoided or at least delayed then surely we should have the drug. After all if there was a cancer treatment that whist not effective on the primary tumour but reduced or delayed the spread of secondary tumours, I am sure that would be licensed.”

Mark Harrington, May 2017, London

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.


  • I live in hope but no expectations these days. All I can say is, if someone with PPMS sat on the board of NICE, Ocrelizumab would definitely be approved for PPMS. How can anyone say that a drug which could prevent you becoming effectively quadriplegic isn't cost effective, as currently the cost of your treatment is nil? That's just a totally nonsensical standpoint.

    How would you feel if something that could stop your chances of having to have your every bodily need being taken care of by a stranger wasn't going to be offered to you – on the grounds of cost??? Cost to who – oh yes, I'd have to pay for my own care costs, but the country would have to pay to prevent me needing care.

    It's my quality of life we're talking about here, and I WANT SOME.

    A wheelchair is already beckoning (I'm EDSS 6.5), and I don't want to go there, I'm only 51. I don't want to chance being bedridden by the time I'm 60.

    It seems to me that the only two things people are scared of getting (and therefore will pay towards drugs which prevent/moderate them on the NHS) are cancer and dementia. But really, these are not the only things we need treatments for….

    • I agree with you when you take into consideration the economic impact of loss of arm function, and hence loss of independence, the costs of managing PPMSers soar. The problem is that when we did the trials we didn't include people with an EDSS above 6.5 so the bean counters will say that we don't have evidence that ocrelizumab works in this population.

  • I'm afraid to say that neuros let down their patients every tIme they diagnose their patients with Huntingtons, MND or progressive MS. My neuro was thrilled that my MRI confirmed his suspicion that I had RRMS. He was so full of himself. I wished I'd got my husband to punch him on the nose as he offered me no treatment and 15 years later he is no doubt enjoying his NHS pension / private consultancy fees.

    • I suspect your neuro was relieved you at least had a treatable condition. Isn't it their jobs to make correct diagnoses?

  • I have had PPMS since 2006. I was twenty-seven years old then. I am pretty disabled now but use a wheelchair outside and walking aids at home. I am 38 now. That is still not old-old, yet I feel completely disenfranchised.

    I am not totally depressed by my situation, however. I am putting up a heck of a fight. To label me as a scrounger or beyond redemption is callous.

    This government will state fund cancer treatments that may not work for every patient, yet more and more of the costs of my care are being placed on me.

  • I too am trying not to be too depressed about my future. I have been diagnosed with PPMS for under 3 years but as I am nearly 62 the possibility of treatment for me seems unlikely. It is vital that there is an emphasis on saving upper body performance in the future but trials take years so it will be too late for many of us. But this isn't the only major problem we face. The current situation where disabled people are having their benefits withdrawn creates a very bleak outlook for so many of us – it is hard enough to cope with the effects of MS without proper funding but the added trauma of being refused help when you need it and made to feel unworthy of support is so damaging. The human cost of such policies is ignored by the current government.

  • Uau …i´m speechless
    People in England are treated like numbers
    How much does an neuro makes in a consultation for people with ppms
    wich there is no cure?
    So basicaly they are charging for offering nothing…

  • A very poignant and heartfelt letter by Mr. Harrington. As a person with SPMS I also feel his frustration. Diagnosed in 1995 I started beta interferon with the hope of preventing disability progression. Since I worked near a large medical center I would visit the health sciences library and read the latest issues of Neurology, Neuroimmunology, Journal of Immunology, etc. There were papers and papers elucidating the pathology of MS. Surely this disease would be cured in coming decades. Fast forward to 2017. Maybe we are close to curing MS with the B and T cell depleting drugs and stem cell therapies but progress on repairing damage remains elusive.

  • Don't believe everything you read in the newspaper. I have had MS all my adult life and I'm 60 years old. Over years we've heard about this cure that cure, but none have been effective at ridding people of the disease.
    To say that if we had cancer things would be different is a complete myth.
    I had a scan that went to an MDT meeting for something that a radiologist suggested I see the lung doctors. I waited and I called and called. Finally, I had an appointment 2 months later. I arrived to find there was no doctor and I saw a specialist nurse. The first time I saw a Respiratory doctor was the surgeon 4 months later who told I might die.
    I'd only been given a booklet by the nurse who marked the pages I needed to read, that was the only information I had.
    Following surgery I was in excruciating pain and once again my appointment was with the nurse and only after I complained the consultant came in asked me if I'd been doing gardening or DIY and then left. So if anyone has the illusion that cancer patients have it better you are mistaken. The only thing is to tick the correct box on 8th June.
    We're not voting for one person, we're voting for the person in your area that can be trusted to have his/her constituents interests as a priority, whatever party they are.

  • Can I ask why he hasn't been offered Alemtuzumab?

    I think we forget when considering the risks of drugs the risks of not taking them. If the probability of improvement (including slower decline) is even slightly higher than the probability of deterioration, then the expected value of the compound is positive and it should be used.

By Prof G



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