Prof G is in a melancholic mood. Why?
This week I am doing video consultations with all the volunteers who participated in the pivotal phase 3 and 10-year extension studies of the alemtuzumab clinical trials. My objectives are three-fold. Firstly, to make sure they are referred back into a routine NHS MS service and are not left floundering without follow-up. Secondly, to complete a few exit EDSS examinations of the last few subjects and thirdly, and most importantly, to thank them for their time and commitment to these trials.
During my video consultations, it dawned on me that I have never seen a cohort of patients doing so well 10+ years into their MS disease course. The majority are NEDA (no disease activity) fully functional and participating fully in life. Yes, fully in life; married, in civil and other partnerships, working, with families, playing sports, participating in creative activities, volunteering and with very few symptomatic MS problems. Yes, a few of them have thyroid problems, but these are all being managed without a major impact on these patients lives.
I am convinced that some of these trial subjects may actually be cured of having MS. I am witnessing something extraordinary and at the same time something very sad. Why have we, the MS community, not adopted early alemtuzumab treatment as the standard of care? Why wouldn’t you want to take a chance on a treatment that maximises your chances of staying fully functional and may even offer a cure?
The patients who are not doing so well, unfortunately, got onto alemtuzumab late and therein lies the epiphany; early highly-effective treatment is the only way to realistically slay this beast. Knowing what I know, if I had MS I would have no hesitation being treated with alemtuzumab or even HSCT.
The tragedy is that the MS community and the regulators have killed alemtuzumab relegating it to a second or in most countries a third or fourth line agent. This is an international tragedy and I am not sure if we will ever get alemtuzumab back to its rightful place as a first-line treatment option for early active MS.
Alastair Compston, his protege Alasdair Coles and the Cambridge team deserve all the plaudits for getting this innovation to the clinic. However, sometimes this is just not enough to get wide adoption of an extraordinary innovation.