“Does the aphorism ‘Time is Brain’ apply to MS? Yes, I think it does. When we were attempting to get alemtuzumab licensed as a firstline treatment in Europe, I used the following two case studies to illustrate what the potential price is of delaying access to a highly-active treatment; an 18 month delay and two relapses later is the difference between the two narratives (EDSS 0.0 vs. EDSS 3.5).”
“Both these patients kindly agreed to have their case studies presented and ultimately written-up. Both are out of the MS closet and have published lay summaries of their experiences (see below). I appreciate them doing so; a story, or narrative, makes the trial data relevant and come alive. The following slideshow is a precis of their case reports and tries to put their stories into a contemporary context of treating-2-target of NEDA with a choice of an induction therapy in the hope that it results in long-term remission and possibly an MS cure.”
“Why I am I rehashing this theme? Simply because I am currently looking after a patient who clearly illustrates ‘Time Matters’. This patient has highly-active RRMS and is JCV seropositive. Whilst she was waiting for her NHS alemtuzumab infusion slot she has had a devastating spinal cord relapse. If she had had her alemtuzumab the week after we had made the decision to go the induction route this relapse would probably have been prevented. She is now EDSS 7.0 with bilateral sphincter involvement. At present she requires a urinary catheter. Although she is likely to make a recovery from this attack the recovery may be incomplete. I sincerely hope she doesn’t pay the price of an NHS delay.”
“When you analyse how much time is wasted in MS care pathways you quickly realise that we, the MS community, need to change our attitude to the management of MS. This is why I am leading on a MS policy document focusing on the issues ‘time matters’ and ‘brain health’. Only after we change our management philosophy and treat MS focusing on long-term brain and spinal cord health will maximise the promised improvements in outcome that our therapies offer relapsing MSers in 2015. May be you disagree?”
McCarthy et al. Timing is everything in the treatment of multiple sclerosis. BMJ Case Rep. 2015 Apr 15;2015.
We present two similar cases of relapsing-remitting multiple sclerosis, both of whom received treatment with the monoclonal antibody alemtuzumab, but had significantly different long-term outcomes. Patient A is 12 years into his illness and was treated early in his disease course, he has no disability and continues to perform at a high level as a professional golfer. Patient B was initially started on interferon-β1a therapy and went on to have two disabling relapses on this treatment which resulted in a degree of fixed disability prior to the start of alemtuzumab. 10 years into his disease course he has moderate disability and daily symptoms of spasticity in his legs which impair his quality of life. These two contrasting cases highlight the difficult decision of when to start potent immune modulating therapies for multiple sclerosis in young adults who appear well early in their disease but have the potential to rapidly accrue irreversible disability from future relapses.