Rachel Horne interviews ProfG to ascertain why the Department of Health and NICE have said no to ocrelizumab for treating people with PPMS. 


“We don’t care a toss about PPMSers, all we are worried about is rationing high-cost drugs and making sure we keep the system simple”, said a DoH spokesperson. “We cannot change the NHS accounting system to have two prices for the same drug”, he added

“Why?”, asked Prof G.

“Don’t you understand, how the NHS works?”, he replied. 




“I am too conflicted to take on this challenge. People without conflicts of interests will need to take the fight to the DoH and Government”, concludes ProfG. 


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.

12 comments

  • First, it should be up to researchers to decisively prove that MS is one disease with progression from the start and then this would be a non issue.

    Second, DOH and NICE should ban financial support of all CRAB drugs as the do not alter the progression of MS. This would save billions so that more effective drugs can be covered. Also, this would prevent Pharma and it's researchers from comparing new therapies to low lying fruit, the CRAB drugs. This would advance research greatly as well.

    Third, products like rituximab, instead of ocrezulimab, (or generic IV cladribine vs oral Mavenclad or generic alemtuzumab vs Lemtrada) which work by the same or very similar mechanisms should be studied in treatment of progressive MS in well thought out trials. This would provide effective treatments for all MS patients and save billions for the system as well.

    • I think there are responders (minority) and non-responders (majority). We must not focus on the average response. Some MSers are doing exceptionally well on the CRABs. What we need to do it identify the non-responders and switch as soon as we see a poor response to treatment. This is why we promote a treat-2-target strategy for MS. There is no one-size fits all.

      The CRABs have taught us a lot about MS; we mustn't forget that.

    • However, we know from studies that CRABS do not affect the brain atrophy rate at all, whereas most of the rest DMTs affect that part in some extent -or totally.
      Of course brain atrophy is not a very reliable measurement for progression but we dont have many more to use.
      So, if a patient does not relapse on CRABS and seems stable should he/she stay on them in your opinion?
      (I myself have seen patients do better on Copaxone than on better DMTs)

    • "The CRABs have taught us a lot about MS; we mustn't forget that."

      Yes..CRABS don't work on progressive MS so not a cure for any MS.

      No need to test a drug for 20+ years. If it won't stop progression in PPMS it's not a cure for any MS.

  • "The CRABs have taught us a lot about MS; we mustn't forget that. "

    Prof: Gavin Giovannoni

    "There´s almost no evidence that any of this drugs make a diference in the long term,"

    Prof:George C. Ebers

    I was one of the investigators that was contacted from the very beginning,when the interferon trial

    was planned in 1986/87 and i was a principal investigator of the Serono

    study with Rebif i basicaly

    wrote the paper for the first interferon paper

    I fell out of sync with things when i could´nt get pharmaceutical industry to do the studies that were

    really needed,which is looking to long term out comes where you reach a point where something

    really important was happening ,the like, the developing of progressive disease, could´nt get them to do it

    could tell you that some (pharma employees) told me frankly “ why would we do this?”

    “We´re selling lots of drugs ,we`re making lots of money, doing that study could only be bad for us”

    “if it shows that does work ,than it will be right where we are right now”

    “If we show that it does´nt work we lost the whole ball game”

    There ´s almost no evidence that any of this drugs make a diference in the long term,

    what they do very cleverly is “leave the impression that its going to make a diference in the long

    run” with actually saying so

    Thats when the controversy begin ,because, when pressure was put on them 20 , 25 years ago

    to carry out the studies to make them longer and reach harder outcames, lets say time to needing a cane to walk ,the FDA where the only ones that have the power to enforce this

    All they have to do was say: Ok you dont get the long term out come?

    No aproval

    And there is nothing more motivating for a pharmaceutical company than tell them their gonna have

    their licence for the drug jerked if they dont comply

    They never did it

    Prof:George C. Ebers

    🙁

    Obrigado

  • Thanks for this transcription Luis. This one, from the refreshingly outspoken Prof Ebers speaking at the EMA, is also very sobering.

    Personally, I'd rather entrust my PPMS and CNS to drinking Concord purple grape juice than any of the current DMDs. At least it's not hammering my immune system and/or general health whilst doing something/nothing. And, at the very least, it's delicious.

    But, each to there own, and all the best to everybody.

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