Sunday, 25 June 2017

The Burden of Multiple Sclerosis

This study examines the cost of MS in different European Countries if you go East the amount spent on people with MS is lower. However you can see that the costs are not harmonised across Europe. 

In the UK the cost is low. Is this because of efficiency or are we near the bottom of the pile (yes you could add about 10-20%  to get a fairer view, because I used todays exchange rates).

Switzerland is out in front on the amount it spends

Multiple et al. New insights into the burden and costs of multiple sclerosis in Europe Mult Scler. 2017 Aug;23(2_suppl):4-216

BACKGROUND:To assess the value of management strategies in multiple sclerosis (MS), outcome data have to be combined with cost data. This requires that cost data be regularly updated.

OBJECTIVE AND METHODS: This study is a cross-sectional retrospective study in 16 countries collecting current data on resource consumption, work capacity and health-related quality of life (HRQoL). Descriptive analyses are presented by level of severity; costs are estimated in the societal perspective, in 2015

A total of 208 patients (mean age: 38.5 years) participated in the Russian study; 97% were below retirement age, and of these, 49% were employed. MS was reported to affect productivity at work in 63% of patients. Overall, 87% and 41% of patients felt that fatigue and cognition were a problem. The mean utility and costs were 0.769 and 578,000 RUB at Expanded Disability Status Scale (EDSS) 0-3, 0.509 and 826,000 RUB (€12,407) at EDSS 4-6.5, and 0.071 and 1,013,000 RUB (€15,214) at EDSS 7-9. The average cost of a relapse was 33,000 RUB (€496) 

A total of 747 patients (mean age 47 years) participated in the Czech Republic; 86% were below retirement age and of these, 49% were employed. Employment was related to disease severity, and MS affected productivity at work for 82% of those working. Overall, 92% and 66% of patients experienced fatigue and cognitive difficulties as a problem. Mean utility and annual costs were 0.832 and 257,000CZK (€9,776) at Expanded Disability Status Scale (EDSS) 0-3, 0.530 and 425,500CZK (€16,183) at EDSS 4-6.5 and 0.141 and 489,000CZK (€18,606) at EDSS 7-9. The average cost of a relapse was estimated at 12,600CZK (€480)
A total of 521 patients (mean age 47 years) participated in Hungary; 85% were below retirement age, and of these, 47% were employed. Employment was related to disability and MS affected productivity at work for 82% of those working. Overall, 94% and 66% of patients experienced fatigue and cognitive difficulties as a problem, respectively. The mean utility and annual costs were 0.691 and 3,432,000HUF (€11,0680) at Expanded Disability Status Scale (EDSS) 0-3, 0.491 and 5,262,000HUF (€16,970) at EDSS 4-6.5 and 0.076 and 6,235,000HUF (€20,108) at EDSS 7-9, respectively. The average cost of a relapse was estimated at 240,500HUF (€776).


A total of 779 patients (mean age = 57 years) participated; 72% were below retirement age and of these, 36% were employed. Employment was related to disease severity, and MS affected productivity at work for 84% of patients. Overall, 96% and 72% of the patients experienced fatigue and cognition as a problem. Mean utility and annual costs were 0.735 and 11,400GBP (€12,949) at Expanded Disability Status Scale (EDSS) = 0-3, 0.534 and 22,700GBP (€25,785)at EDSS = 4-6.5, and 0.135 and 36,500GBP  (€41,460) at EDSS = 7-9. The mean cost of a relapse was estimated at 790GBP (€870).

A total of 411 MS patients (mean age = 40 years) participated in Poland; 94% were below retirement age, and of these, 59% were employed. Employment was related to disability, and MS affected productivity for 85% of those working. Overall, 97% and 71% of patients experienced fatigue and cognition as important problems, respectively. Mean utility and total annual costs were 0.686 and 48,700 PLN (€11,523) at Expanded Disability Status Scale (EDSS) 0-3, 0.521 and 59,200 PLN (€14,008) at EDSS 4-6.5 and 0.208 and 81,600 PLN (€19,308) at EDSS 7-9, respectively. The average cost of a relapse was 3,900 PLN.(€924)


A total of 462 patients (mean age 43 years) participated in Spain; 96% were below retirement age and of these, 45% were employed. Employment was related to disability, and MS affected productivity at work for 72% of those working. Overall, 92% and 64% of patients experienced fatigue and cognitive difficulties as a problem, respectively. Mean utility and total annual costs were estimated at 0.772 and €20,600 at Expanded Disability Status Scale (EDSS) 0-3, 0.486 and €48,500 at EDSS 4-6.5 and 0.182 and €68,700 at EDSS 7-9, respectively. The mean cost of a relapse was €2050.
A total of 491 patients (mean age 47 years) participated in France; 82% were below retirement age, and of these 56% were employed. Employment was related to disease severity, and MS affected productivity at work for 90% of patients. Overall, 95% and 67% of patients experienced fatigue and cognition as a problem, respectively. The mean utility and annual costs were 0.735 and €22,600 at Expanded Disability Status Scale (EDSS) 0-3, 0.500 and €38,100 at EDSS 4-6.5, and 0.337 and €48,100 at EDSS 7-9, respectively. The average cost of a relapse was estimated at €2300.

A total of 5475 patients (mean age 52 years) participated in Germany. In all, 84% were below retirement age, and of these, 51% were employed. Employment was related to disease severity, and MS affected productivity at work for 80% of patients. Overall, 96% and 78% of patients experienced fatigue and cognitive difficulties as a problem, respectively. The mean utility and total annual costs were 0.786 and 28,200€ at Expanded Disability Status Scale (EDSS) 0-3, 0.586 and €44,000 at EDSS 4-6.5 and 0.273 and €62,700 at EDSS 7-9, respectively. The mean cost of a relapse was estimated at €2500.
A total of 516 patients (mean age, 53 years) participated in Austria; 72% were below retirement age, and of these, 46% were employed. Employment was related to disability, and MS affected productivity at work for 77% of those working. Overall, 94% and 67% of patients experienced fatigue and cognition as a problem. Mean utility and total annual costs were 0.778 and 25,100€ at Expanded Disability Status Scale (EDSS) 0-3, 0.579 and 44,100€ at EDSS 4-6.5, and 0.244 and 73,800€ at EDSS 7-9. The mean cost of a relapse was estimated at 2563€

A total of 1010 patients (mean age = 45 years) participated in Italy. In total, 94% were below retirement age, and of these, 56% were employed. Employment was related to disability, and MS affected productivity at work in 77% of the patients. Overall, 96% and 65% of the patients experienced fatigue and cognitive difficulties as a problem, respectively. Mean utility and total annual costs were 0.735 and €22,900 at Expanded Disability Status Scale (EDSS) of 0-3, 0.534 and €40,100 at EDSS of 4-6.5, and 0.135 and €53,300 at EDSS of 7-9. The mean cost of a relapse was estimated to be €2600.
A total of 535 patients (mean age 48.5 years) participated in Portugal ; 92% were below retirement age and of these, 43% were employed. Employment was related to disease severity, and MS was felt to affect productivity at work by 72% of patients, most often through fatigue. Overall, 98% and 74% of patients felt that fatigue and cognition were a problem. Mean utility and costs were 0.756 and €16,500 at the Expanded Disability Status Scale (EDSS) 0-3, 0.572 and €28,700 at EDSS 4-6.5 and 0.206 and €34,400 at EDSS 7-9. The average cost of a relapse was estimated at €2930.
A total of 1856 patients (mean age: 54 years) participated in Belgium; 66% were below retirement age, and of these, 44% were employed. Employment was related to disease severity, and MS affected productivity at work in 85% of the patients. Overall, 95% and 72% of the patients experienced fatigue and cognitive difficulties, respectively, as a problem. Mean utility and annual costs were 0.703 and €26,400 at Expanded Disability Status Scale (EDSS) 0-3, 0.478 and €45,300 at EDSS 4-6.5, and 0.193 and €62,000 at EDSS 7-9. The mean cost of a relapse was estimated to be €3000.
A total of 382 patients (mean age: 54 years) participated in the Netherlands; 81% were below retirement age and of these, 31% were employed. Employment was inversely related to disease severity, and MS affected productivity at work for 82% of patients. Overall, 96% and 73% of patients experienced fatigue and cognitive difficulties, respectively, as a problem. Mean utility and annual costs were 0.744 and €23,100 at Expanded Disability Status Scale (EDSS) 0-3, 0.595 and €32,300 at EDSS 4-6.5, and 0.297 and €50,500 at EDSS 7-9. The mean cost of a relapse was estimated at €3000.
A total of 1864 patients (mean age 56 years) participated in Sweden; 74% were below retirement age, and of these, 55% were employed. MS was reported to affect productivity at work in 78% of patients. Overall, 94% and 72% of patients felt that fatigue and cognition were a problem, respectively. The mean utility and costs were 0.757 and 244,000SEK (€24953) at Expanded Disability Status Scale (EDSS) 0-3, 0.563 and 384,000SEK (€39,271) at EDSS 4-6.5 and 0.202 and 888,000SEK (€90,814) at EDSS 7-9, respectively. The average cost of a relapse was 36,900SEK (€3774).
A total of 721 patients (mean age 48 years) participated in Switzerland; 90% were below retirement age, and of these, 65% were employed. Employment was related to disease severity, and MS affected productivity at work for 69% of patients. Overall, 93% and 64% of patients experienced fatigue and cognition as a problem, respectively. The mean utility and annual costs were 0.799 and 29,600CHF (€27,272) at Expanded Disability Status Scale (EDSS) 0-3, 0.614 and 66,800CHF (€61,547) at EDSS 4-6.5 and 0.348 and 110,800CHF (€102,087) at EDSS 7-9, respectively. The mean cost of a relapse was estimated at 7,600CHF. (€7,002)

10 comments:

  1. Do AHSCT good for patients health, quality of life and health and social care budgets. Plus less burden on families of PwMS

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  2. Its a big bussiness us Msers, i only wish AHSCT was an option in Europe... Im mostly asymptomatic (2 years later) after going for alemtuzumab months into the diagnosis... After that the cost of my care is the anual MRI and a couple visits a year that take about 3 minutes, 0 $ on drugs, that's very good cost ineffectiveness, I'm also able to work full time with shifts and finishing my medical specialty... But I can't help feeling that reality can change any day... I, and many more would feel more calm having something up our sleeves in case things go south, AHSCT needs to be an option, its probably the best cost-effective treatment we got as today... I'm curious... in my hospital they don't have anyone that I know of that has failed alemtuzumab, but in Barts you probably do as you treat many more with it, what option do they got? As we know sucessive rounds have less chance to be effective and accomplish long term remmision, when do you stop? What can you try? There's nothing published about it that I can find.

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    1. Genzyme know the answer they have had data from the MS CARE extension study (n=811). This is clear as sufficient elements to believe this was presented at ECTRIMS 2016 Abstracts in multiple sclerosis Journal. Whilst many people (n=412) received no treatment or other disease modifying drug, some people received a third (n=156), forth (n=48) or fifth (n=8) treatment cycle (Boyko et al. 2016). As we also know the NEDA result is less than 50% maybe not all failers may have been retreated.

      Will they publish this data or leave it as an abstract. The history is they will not publish. But we will be taken to task if we suggest they won't publish this.

      However, we have asked question, How many people fail treatments. If we get no answers, what should we do shut up or publish what we have?

      In the Boyko abstract there is no mention of people not responding but as Genzyme have not published the neutralising data in a peer-reviewed paper this would be hard to admit that there is an issue. Likewise Cambridge have not come clean either, they know there are issues but have not put a figure on it

      We are have few people with 3 cycles, but third cycles have not been funded, so may a case for a switch to something elsee but based on Tuohy data 3 cycels is effective for most people. It seems that NHS England has not made provision for third course, but we know of a centre that has more third cyclers and asked them to do audit.

      We predict the neutralizing antibody response may be more of a problem third to forth cycle. Will genzyme publish this.

      However, we believe that there are failers this can be seen from stuff in public domain. There are (a) People who don't deplete (don't deplete well)in the first place and (b) there are the neutralisers who fail also. The question is how common are these problems.

      It would be better that Genzyme come clean.

      Delete
    2. You can try Ocrelizumab, Natalizumab or Cladribine if Alemtuzumab fails. They are worse drugs but they may work for you.

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    3. It depends why alemtuzmab fails, it is possible that ocrelizumab may not be best option because of genetics of antibody depletion

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  3. Reminds me of when I worked in the environmental dept. of an oil company. The engineer types could not grasp that some things can't be assigned a price, but are still precious. All natural capital needed a £ or $ sign for their stupid - really stupid - sustainability model. Just another example of mankind knowing the cost of everything and the value of nothing.

    Just because someone is ill, can't contribute to the capitalist system directly, and needs care doesn't give them an overall negative value. Just thought I'd throw that into the mix.

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  4. Yes there are issues with alemtuzumab. My private ones: my eosinophiles went to 40% total white cells and my skin started itching intensly about 5-6 weeks post alemtuzumab. At that point the stuff was in theory out of the system, so the neurologists shrugged her shoulders. I have tried everything I could try and nothing really worked, now at nearly 4 months after alemtuzumab things are maybe calming down somewhat, eosinophiles are 11% of total whites but a 20 minute conversation about nothing is enough to exhaust me completely.
    The big question is: was it worth it. Who knows? Looking at new data it probably was not. (Oh, but I look so well my boss thinks I am malingering. So that saves the day).

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    Replies
    1. Was this absolute numbers?

      Remember alemtuzumab depletes the granulocytes less so their percentage will increase. As cells repopulate they decrease.

      What new data says it wasn't worth it? Alemtuzumab is a useful treatment it just comes with problems.

      This may sound weird and please don't answer but have you checked for worm/parasites infection, many years ago we were doing work in guinea pigs treated with cyclosporin, They got an increase in eosinophils, my boss asked were they infected with worms and it turned out they did.

      Another question is are you having allergies this can raise eosinophils.
      The skin itch. At 5-6 weeks circulating antibody will have gone but will all tissue bound antibody, 60% of people can make an antialemtuzumab response within 4 weeks.

      I am not a clinician so pay not attention to me and my rambling thoughts

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  5. Hi CD20cell
    At eight months post first round Alemtuzumab I'm doing OK. Though I want to emphatise with your dealing with the attitude of your boss. As my husband says 'It makes a liar of you' because I look so well and the attitude becomes a lack of sympathy and understanding for the impact of fatigue. This is reinforced by the insistence of some that how I look must mean that Alemtuzumab is 'working' i.e.'curing' me! especially as my walking has improved since my last relapse. This really is a multi-layered disease, isn't it, in how it impacts in a multitude of ways on each and everyone of us, from those without treatment to those with, from those without obvious signs of disability to those with etc, etc Talking if which you've piqued my interest in referencing new data making you think having Alemtuzumab may not have been worth it - will you kindly let us know what data you're referring to.
    Hope the itching eases and that you're still able to enjoy your gardening.

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  6. > A total of 208 patients (mean age: 38.5 years) participated in the Russian study; 97% were below retirement age, and of these, 49% were employed. MS was reported to affect productivity at work in 63% of patients. Overall, 87% and 41% of patients felt that fatigue and cognition were a problem.

    the worst thing is that medications that work in fatigue (modafinil, methyphenidate and so on) are illegal here....

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