Re (your Twitter post): “SPMS always get short changed; I think industry is scared of taking in risk in relation to progressive disease. Time to change”.What exactly are you planning on doing to change that Prof G? Having seen the Fingolimod corporate advert extolling its excellence I have to ask that if it is so effective why it is only approved for RRMS patients? If there is a genuine belief that it could stem progression then it seems heinous it’s not being given to progressive MS victims. Your declaration of ‘time to change’ is inappropriate because any change, as you argued before, will take years approve. I ask you Prof G: would you, right now, with all that you know, dare to prescribe Fingolimod to a progressive MS patient? If your answer is positive then why isn’t the drug being more widely issued?
Pharma always pick the low lying fruit first; i.e. RRMS & CIS. CIS is simply early RRMS. Experience has taught us that trying to modify the course of non-relapsing progressive MS (SP & PPMS) is difficult. We assume there are different processes that underlie the relapsing and progressive phases of the disease. The good news is that Fingolimod and Ocrelizumab (anti-CD20) are currently being tested for PPMS, which in my opinion is the same disease as SPMS. Without evidence and funding in place it is impossible to prescribe Fingolimod for SPMS; the cost of the drug is £19,000 per year in the UK and $48,000 per year in US.
Good grief, it's always about the dollars man. I think that if a neurologist feels that a drug will benefit a SPMS patient then it ought to be prescribed. I know that in Europe MS costs you guys like $15 billion year to manage and treat. That cost incorporates things like medical care, social benefits and other things you provide the long term sick. That's a lot of money.Now, let us for a moment say that a drug like Gilenya (Fingolimod to you guys) proves to reduce brain atrophy in a patient with SPMS and keeps them from degenerating further. That person, I will argue, may save your government much more money in the long run than not giving them the drug. $48,000 is a bargain compared to what the eventual possible costs due to the disease can be. If that is the case then it’s prudent to sidestep bureaucratic nonsense and just give the drug to the patient. To be honest, Gilenya should have been concurrently tested in a group of progressive MS patients at the time it was trialled in RRMS patients during its phase III period 5 years ago. It would have sped things up and may even been more cost effective.This is a pretty awesome blog. I like it.
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