Thursday, 1 December 2016

#ThinkHand & #PoliticalSpeak: where to from here for wheelchair users?

Exasperated, but not desperate. We need help getting our #ThinkHand message across. #ThinkHand #PoliticalSpeak #MSBlog

After my experience at the ECF, and from general feedback I am getting from attendees of meetings I have spoken at, it appears as if our #ThinkHand campaign is floundering. We have yet to interest any Pharma company to take arm and hand function, in more advanced MS, seriously. A recent discussion with a one Pharma Exec about targeting pwMS who have an EDSS of 7.0 and 7.5 - wheelchair users but still independent with good upper limb function - drew a blank look. He thought I was too ambitious and any trial in this space was too risky. He thought a discussion with the regulators would be a place to start. 

What do you think? Are we barking-up the wrong tree? Should we really write-off pwMS in wheelchairs as being too far gone to treat? 

A recent comment I received, from someone who shall remain nameless, which really galls me is that 'by the time pwMS are in wheelchairs they tend to be unemployed and hence are not paying tax, therefore we should be trying not to spend excessive amounts of NHS money on them'. This individual is a HCP seeing pwMS. This comment, however, exposes the disincentive for Pharma to invest in  more advanced MS; their business models are underpinned by cost-effectiveness assessments and if the economics don't add up, which won't allow them charge high prices for DMTs, they won't invest. In short the business side of Pharma appears to have also written-off pwMS who use wheelchairs. 

What shall we do about this situation? We are going to push ahead with our plans to do an exploratory trial of an off-label DMT in pwMS in wheelchairs. We had a wonderful and remarkable meeting with a pwMS on Monday who is going to give us a grant/donation to help enable our wheelie trial. We will use the money to update the ABILHAND patient-related outcome measure to become more MS-specific, do some work on neurofilament levels in wheelchair users and host a meeting of possible investigators for the trial. We are also going to need your help in making sure MS stakeholders the world over don't dismiss pwMS who are using wheelchairs and being irredeemable. Any thoughts and suggestions regarding a political lobby are most welcome.

With regard to our three hypotheses that underpin our #ThinkHand campaign, i.e. therapeutic lag, asynchronous progressive MS and the MS length-dependent axonopathy hypotheses, we are convinced they are true and make a strong case for advanced MS being modifiable. Unfortunately, as Arthur Schopenhauer states 'all truth passes through three stages. First, it is ridiculed. Second, it is violently opposed. Third, it is accepted as being self-evident'. At present our hypotheses are at stage one and are being ridiculed.

Arthur Schopenhauer (22 February 1788 – 21 September 1860)

19 comments:

  1. Think you need health economic data to show utility of upper limb function to people with MS, and to translate this into quality adjusted life years (QALYs). They are the driving factor behind cost-effectiveness decisions, and therefore investment decisions regarding clinical trials. The experiences of Fampridine, and challenges of access in the UK, are telling

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    1. Re: "...you need health economic data..."

      We have this, but it us unpublished. Giselle Kobelt will allow us to use her data for both the UK and wider EU for our campaign and grant application. All I can say now that when you lose upper limb function it costs a lot.

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  2. Comments like 'by the time pwMS are in wheelchairs they tend to be unemployed and hence are not paying tax, therefore we should be trying not to spend excessive amounts of NHS money on them' make me feel that my continued existence is a burden to "hard working people".
    I hope that the person who commented never has to suffer the catastrophic changes that this horrible disease brings.
    By the way I am a former employer, have paid plenty of tax & NI, served in the military, I am now in a wheelchair, medically retired and can no longer write. This all happen to me within 2 years of my diagnosis.
    Your campaign is vital to me as hand function gives me the only independence that remains and is the very last thing that I wish to lose.

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    1. "Your campaign is vital to me as hand function gives me the only independence that remains and is the very last thing that I wish to lose."

      I second that.

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    2. "...pwMS are in wheelchairs they they tend to be unemployed and hence are not paying tax, therefore we should be trying not to spend excessive amounts of NHS money on them' make me feel that my continued existence is a burden to "hard working people"."

      I could not agree more. The only words of comfort I can offer is that it's stupid more than personal, and that I believe it's this consumerism mentality we seem to have become slaves to where if you consume you must pay, not matter what the service, otherwise it's just not fair to those people who do pay (those lucky people who whinge about working 9 to 5 without realising what it is like to never have the option again of working of participating fully in society).

      Maybe I'll go so far as to call that a Trumpist argument.

      I do, however, wish that the administrators of this blog would sometimes not get caught up in the point they are trying to make (which is entirely consistent with the point Dale Collins is making): and remember that when you are sitting in a wheelchair reading this blog, it is an incredibly hard and hurtful thing to read.

      It is akin to being black and reading racist comments within a community blog or being a single mother and reading someone talk about the undesirable state of single motherhood because it affects the IQ of their children (a perhaps not entirely correct interpretation of the Bell Curve).

      Point is: I understand the point being made and the efforts of this blog to counter-act it.

      But my god that is still so incredibly hurtful and vile to read: and I don't have MS or a wheelchair.

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    3. Anon, I do have MS and I am sitting in a wheelchair. You seem to be suggesting that the blog should be censored to protect my feelings. Believe me, I don't feel hurt by the ignorant comments of a stranger, I feel angry. If people are saying these things, I want to know and I also want to know who they are.

      I suspect that, as well as not having MS, you are also neither black nor a single mother.

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    4. Here here anonymous. MSers are more resilient that people realise.

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  3. Approaching politicians directly, we'll get no traction - they will just shrug and say, "Sorry, not our business", unless it can be turned into a story. We need a journalist who can get on the Today programme with an 'outrage' story coinciding with a broadsheet (prob Grauniad) front page splash: "Tens of thousands of wheelchair-bound MS sufferers written off and denied treatment because it's not cost-effective". Note deliberate use of offensive language. Then the Beeb would follow normal format: invite Doctor to expain problem and pharma exec/DofH spokesperson to reply. Then we can write to MPs etc and ask where they stand and what they'll do about it.

    Anyone know any health reporters?

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  4. "by the time pwMS are in wheelchairs they tend to be unemployed and hence are not paying tax, therefore we should be trying not to spend excessive amounts of NHS money on them"

    As if people in wheelchairs contribute nothing.

    I'm so tired of reading such nasty, ignorant, fascist comments on this site, with no direct, robust rebuttal. One reason to visit this blog a lot less.

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    1. Re: "I'm so tired of reading such nasty, ignorant, fascist comments on this site, with no direct, robust rebuttal."

      I think you have missed the point of our #ThinkHand campaign. It is a rebuttal and more, not less, a reason to keep updated with the campaign.

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    2. Prof. G. is quite right.

      I can understand your frustration SpieBente but when faced with such small-minded prejudice we need to be more, not less, resolute and cool-headed in pursuing the campaign.

      As disgraceful as the HCP's views are, it is better that we know what we are up against.

      So don't shoot the messenger.

      Who else do you know of Prof. G's seniority who is openly sharing his work with pwMS?

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    3. I do appreciate your excellent campaign.

      Perhaps it is the political scene in the UK these days which heightens my sensitivity to callous conduct and obsession with material wealth over humanity. But I feel this "HCP seeing pwMS" should be thoroughly admonished for such a remark.

      I'm not in a wheelchair, but I would be no less human if I was. Anyway, thankfully there are health professionals such as you who know this too.

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  5. Please don't write-off pwMS in wheelchairs as being too far gone to treat. I was diagnosed with MS 25 years ago and have been in a wheelchair since 2008. I continue to work full-time as a research coordinator. Thankfully, I use a computer and have only experienced mild upper extremity impairment. I dread the loss of use of my hands/arms. So please continue with your plans to do an clinical trial of an off-label DMT in pwMS in wheelchairs.

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  6. Someone who is unemployed might not currently be paying Income Tax, but anyone ever heard of indirect taxes? (Let alone considering any past or future direct taxation contributions that an individual might make. Oh, wait, perhaps they also think we should deny care to other economically inactive sectors of society, like babies and children, and close all the neonatal intensive care units.) That HCP needs some basic lessons in economics. Also, a refresher in basic consideration and humanity.

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  7. It makes me so incredibly mad to hear comments like that, writing off people on wheelchairs. I've been in a wheelchair since pretty much the start of my ms as it started with some thwacking great lesion on my spine, but less in my brain. I've never had Optic Neuritis, for example, but I still think that all the research on that is valid!

    Being in a wheelchair is not the end of the world - sometimes it's a saving grace, because you gain a whole load of independence that you wouldn't have had without it. There is no wheelchair for your arms, however! Mine are weak and my hands feel like I'm wearing oven mitts, but I've taken up new arts and crafts to preserve my dexterity.

    All power to you with #ThinkHand and considering a DMT trial for people with higher numbers in EDSS. As you well know, it's not a linear scale in many ways, so presuming that people with higher numbers are a right off damns us to that prophecy.

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  8. I'm sitting here smiling. Your frustrations about the response you are getting to your ideas are exactly what MS patients face in many neurologists they see, except the power distance is significantly different in the 2 situations.

    Sad, hey. Sometimes I despair.

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    1. Re: "Sad, hey. Sometimes I despair."

      When you look at the annual costs of going from EDSS 7.0 to 8.0 you won't be smiling; we are talking about quite a jump in both direct healthcare and indirect societal costs.

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    2. Please forgive my sarcasm, none of this makes me smile in the least (though sometimes my misery enjoys company).

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  9. People with MS might be medically retired not needing a wheelchair but need a carer. There are people in a wheelchair who pay taxes. Excluding a person from testing because they are in a wheelchair and not paying tax is a rediculous and outdated argument.

    The #Thinkhand message is so important. I am not in a wheelchair but dependent upon a rollator or two wheeled walker. My arms and hands are essential in my ability to move and there for maintain my quality of life. I am able to run the kitchen and cook meals while my wife works so use of my arms and hansd is essential. My hands are becoming clumsy and I have difficulty buttoning up a shirt. Will I lose the ability to use a sharp knife to prepare vegetables?

    ProfG, you have highlighted a very important issue. Do not despair

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