Oh no ProfG, not another MS campaign! #ThinkHand #PoliticalSpeak
"I was criticised this week for having launched yet another MS campaign, #ThinkHand, without defining the objectives of what we are trying to achieve with the campaign. This campaign is really quite long in the tooth and elements of it have been appearing on this blog for several years, but more on that later. What you have to realise is that our blog is really now an MS rag, therefore it is entirely appropriate to be a vehicle for MS-related campaigns. I am also sure that you the reader can engage with multiple simultaneous campaigns at once."
"Because we are focusing on hand function this month does mean that our Treat-2-Target of NEDA, Brain Health, Essential Off-Label DMTs, Charcot Project (preventing MS), Digesting Science (children of pwMS education), ClinicSpeak (MSer education and self-management), NeuroSpeak (healthcare professional education) and Holistic Management of MS (improving MS services) campaigns should be abandoned. In reality these are all complementary; all we are trying to do is improve the lives of people with MS and their families."
"As always with any campaign on our blog there is not one but several objectives to the campaign. SPREAD-HOPE is the acronym that captures the objectives of #ThinkHand succinctly."
S is for Scientific: to establish the length-dependent axonopathy and therapeutic lag hypotheses as the main theoretical construct for explaining progressive MS and for designing progressive MS clinical trials.
P is for Political: to create a lobby of relevant stakeholders to push the #ThinkHand agenda.
R is for Regulator: to convince the regulators that hand function is very important to people with MS and that they should accept the 9-HPT as the primary outcome in phase 3 progressive MS trials.
E is for Economic: to show that loss of hand function has a greater economic impact to people with MS, and society, than loss of lower limb function.
A is for Awareness: to increase awareness in the MS community and the general public about how important upper limb (hand and arm) function is for people with MS. It is arguably orders of magnitude more important than lower limb function.
D is for Debunk: to debunk the dogma that once a person with MS has lost lower limb function that nothing can be done to stop them from progressing further. This has real-life implications for pwMS, for example in the UK we are meant to stop DMTs in pwMS who have lost lower limb function and have started using a wheelchair. What is the evidence to support this stopping criterion?
H is for Hand: to focus on hand function as an outcome measure in progressive clinical trials and to develop a new and more appropriate patient-related outcome measure (PROM) that captures elements of hand function that are important to pwMS. The current PROMs our out of date and not necessarily MS-relevant.
O is for Optimism: to give people with progressive MS hope; simply because you have progressive MS does not mean that nothing can be done for you. Emerging evidence suggests we have been doing our progressive clinical trials incorrectly. If we had used upper-limb function as the primary outcome in earlier trials we would have had a licensed DMT for you years ago.
P is for Promise: to finally deliver on our PROMISE 2010 programme and deliver effective treatments for people with progressive MS. This means designing, getting funded and doing our own clinical trial focusing on people with more advanced MS; yes, we are proposing including wheelchair users in our trial. We also want pharma to take up the challenge and revisit progressive MS and to start doing clinical trials in more advanced MS using upper limb function, in particular hand function, as the primary outcome measure.
E is for EDSS: to get neurologists to remove and throw away their ‘EDSS blinkers’ and to stop looking at MS-related disability as defined by the EDSS. The EDSS is really not fit for purpose and we really should get rid of it, in particular as an outcome measure in progressive MS trials.
"I sincerely hope SPREAD-HOPE will allow you to buy into the objectives of our #ThinkHand campaign!"
Labels: #ThinkHand, hand function, PoliticalSpeak, SPREAD-HOPE