#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)

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