Please hand me my rose-tinted glasses; I need to lend them to my colleagues. #ClinicSpeak #MSBlog #ECF2016
I had a bit of a disagreement with several of my colleagues in Baveno.
One didn’t like the conclusion I drew about therapeutic lag and the effect of highly-active DMTs in so called ‘non-relapsing progressive MS’. He was of the opinion that if we allowed people with progressive MS, who had no evidence of inflammatory activity on their MRIs, to be treated we would bankrupt the healthcare system. I pointed out to him that the majority of subjects in the natalizumab-SPMS, or ASCEND, trial had no MRI activity and they still responded to natalizumab. Similarly, both the MRI-active and MRI-inactive groups in the ocrelizumab in PPMS, or ORATORIO, trial responded to drug. What this is telling is that MRI is not the be-all and end-all of inflammatory monitoring. It is clear that there must still be inflammation going on beyond the detection threshold of the MRI; in fact, we have known this from pathology studies done more than 20 years ago.
Another argument I had with him is that if we worry about costs and not the unmet need (progressive MS and loss of upper limb function) then we would be paralysed forever (excuse the pun). Pharmaceutical innovation costs are front loaded; in time the prices of drugs drop precipitously and become relatively cheap. When I was a house officer, and a medical registrar, there was a big debate about the high cost of statins and H2-receptor blockers; how could we as a society afford them? Fast forward 30 years and these drugs costs a few pence per day. The same will happen with DMTs in MS; trust me when I say that sometime in the future the cost of MS DMTs will be a fraction of what they cost today. Another factor to take into account is value-based pricing. In other words healthcare systems will work out how much to pay for DMTs in the more advanced stages of MS and they will negotiate a hard bargain with Pharma to reduce the costs. NICE does this already; what they do well is value-based pricing.
Another argument I had was about my MS is 1-disease-not-2-or-3-diseases campaign. Several people disagreed. In the voting poll 48%, just shy of a majority, agreed with me. If I can get the community to accept this proposal then there should not be any resistance to treating MS as one disease. To get to this position you have to accept that MS is a modifiable disease even in the more advanced stages.
I know what you are saying to yourself; ‘Prof G must have written this post wearing his new rose-tinted spectacles‘.
I had a bit of a disagreement with several of my colleagues in Baveno.
One didn’t like the conclusion I drew about therapeutic lag and the effect of highly-active DMTs in so called ‘non-relapsing progressive MS’. He was of the opinion that if we allowed people with progressive MS, who had no evidence of inflammatory activity on their MRIs, to be treated we would bankrupt the healthcare system. I pointed out to him that the majority of subjects in the natalizumab-SPMS, or ASCEND, trial had no MRI activity and they still responded to natalizumab. Similarly, both the MRI-active and MRI-inactive groups in the ocrelizumab in PPMS, or ORATORIO, trial responded to drug. What this is telling is that MRI is not the be-all and end-all of inflammatory monitoring. It is clear that there must still be inflammation going on beyond the detection threshold of the MRI; in fact, we have known this from pathology studies done more than 20 years ago.
Another argument I had with him is that if we worry about costs and not the unmet need (progressive MS and loss of upper limb function) then we would be paralysed forever (excuse the pun). Pharmaceutical innovation costs are front loaded; in time the prices of drugs drop precipitously and become relatively cheap. When I was a house officer, and a medical registrar, there was a big debate about the high cost of statins and H2-receptor blockers; how could we as a society afford them? Fast forward 30 years and these drugs costs a few pence per day. The same will happen with DMTs in MS; trust me when I say that sometime in the future the cost of MS DMTs will be a fraction of what they cost today. Another factor to take into account is value-based pricing. In other words healthcare systems will work out how much to pay for DMTs in the more advanced stages of MS and they will negotiate a hard bargain with Pharma to reduce the costs. NICE does this already; what they do well is value-based pricing.
Another argument I had was about my MS is 1-disease-not-2-or-3-diseases campaign. Several people disagreed. In the voting poll 48%, just shy of a majority, agreed with me. If I can get the community to accept this proposal then there should not be any resistance to treating MS as one disease. To get to this position you have to accept that MS is a modifiable disease even in the more advanced stages.
I know what you are saying to yourself; ‘Prof G must have written this post wearing his new rose-tinted spectacles‘.
CoI: multiple
" He was of the opinion that if we allowed people with progressive MS, who had no evidence of inflammatory activity on their MRIs, to be treated we would bankrupt the healthcare system"This is not a snarky comment, it is a serious question: why is a doctor debating the utility of a treatment on the basis of financial costs? Is that not what the policy makers are there for?I went to a GP the other day. I told the GP I want a certain test – and I know that the government is getting grumpy at the referrals and costs associated with that test, but I wanted it for XYZ reasons. The GP laughed at my concern about the government's stance on these tests and told me he is more than happy to refer me and he did. I felt that he was on my side and he was listening to me.I would run away from a doctor who is more concerned about policy considerations than treating ME. There are plenty of beaurocrats worried about policy and costs considerations – can we just have doctors be interested in our immediate health?
We have 3 definitely or partially positive progressive Ms trials with anti-inflammatory drugs. The tragedy is that OCR will be only PPMS drug, and NAT won't be SPMS drug, because the bad definition of progressive Ms and bad goals of NATtrial. I believe highly effective drugs not only RRMS drugs but also 'SP' and 'PP' MS drugs because MS is one disease. And atrophy independent from the 'phase' of this disease!
"He was of the opinion that if we allowed people with progressive MS, who had no evidence of inflammatory activity on their MRIs, to be treated we would bankrupt the healthcare system."I find it hard to believe that a self-respecting medical professional would say this. Does it not completely fly in the face of the Hippocratic Oath? What about the people who bankrupt the healthcare system through preventable disease caused by lifestyle choices – does he/she have their own view on treating such people too? I hope I never have to rely on such a doctor. Appalling.
Same here. Such a dangerous judge jury executioner and doctor. With doctors like that, who needs politicians really. Maybe it was a non clinician colleague.
I agree entirely.
" … nd these drugs costs a few pence per day. The same will happen with DMTs in MS; trust me when I say that sometime in the future the cost of MS DMTs will be a fraction of what they cost today."… really? The first-line drugs have been around long enough, no signs of the price going down to a few pence a day
That's because their patents haven't expired. Wait until they do. Regarding biologics, a good analogy is the anti-TNF-alpha drugs in RA; the prices are beginning to fall.
i agree in the future DMD's will cost a fraction of todays price but not because of any magnanimous nature of the pharma companies more pure economics of supply and demand because of lack of interest and use of them in a few years time when ms patients become better educated and get hsct at the earliest opportunity often stopping the disease in its tracks. There is already water seeping though the dam and it won't be long before a torrent in the form of hsct treatment comes flooding though.