It is 25 years to the day that I arrived in London to start my PhD on body fluid biomarkers in MS.
What has changed in the last 25 years?
I am still into MS body fluid biomarkers and I am fortunate to have been one of the innovators, and early adopters, of using neurofilament light chain levels in MS clinical practice. NFL is making a big difference and will almost certainly change the way we practice. I predict peripheral blood NFL levels will become the MSologist’s equivalent to CRP in rheumatology.
In the last 25 years, I have witnessed a transformation in MS care from one in which we had no DMTs to one in which we have so many options. Even HSCT is back on the table. When I did due diligence on setting up an HSCT treatment programme at the Royal Free back in 1999 I decided it was too risky; back then the mortality rate was close to 5%. Now the mortality is below 1% and closer to 0.3%-0.5% in low-risk subjects. Many of my colleagues now put HSCT on the table as a treatment option, with many UK centres beginning to use it in everyday practice. I anticipate us getting the necessary funding to run our head-2-head study of HSCT vs. Alemtuzumab so that we will be able to present the risk and benefits of these two treatment options to pwMS.
Other important innovations have been the adoption of the early effective treatment paradigm, treat-2-target of NEDA, rapid escalation and flipping the pyramid. I have also seen the ushering in of the immune reconstitution therapies and have started to participate in the debate of what an MS cure may look like. We are now looking beyond NEDA to the ambitious target of treating MS to maximise lifelong brain health.
I have seen the concept of combination therapy strategies begin to gain traction with several trials underway to target neuroprotection, remyelination and neuro-restoration. The holistic management of MS movement is now the norm, which not only focuses on MS-specific disease mechanisms but also addresses comorbidities and lifestyle factors.
We are looking beyond the relapsing phase of MS and have a licensed treatment for primary progressive MS and potentially another for secondary progressive MS. We are starting a new PPMS trial that aims to protect hand and arm function in pwMS who are already using wheelchairs. A lot of us are pushing for MS to go back to being one and not two or three diseases.
But what has revolutionised the field of MS the most in the last 25 years has been the democratization of knowledge and the emergence of social media as a forum to empower people with MS. No longer do neurologists control knowledge. People with MS are now true partners. The inevitable downside of social media has been the spread of anti-science movements. At least the latter has nudged neurologists and other healthcare professionals to join the debate and to start using social media to communicate with their patients.
My big disappointment is the fact that we haven’t started MS prevention trials. This is despite us have good evidence that EBV is likely to be the cause of the disease. However, this is a challenge I look forward to tackling in the next 25 years. What I am very proud of is our patient and public engagement programmes to raise awareness about the issue of MS prevention.
I feel privileged to be part of such a golden era in the history of both London and the field of MS and to have worked with such dedicated people at the Institute of Neurology and now at Barts and The London.
From a personal perspective, I am obviously older and I think a little wiser. I have two grown-up daughters and I am still happily married to my wife of 32 years. I am still running, albeit shorter distances and less often, and I have taken up gardening. I am also trying to walk-the-talk and to live a brain healthy lifestyle; in particular, eating real food. I admit I feel better for it and would recommend it to everyone.
I now identify myself primarily as a Londoner with a waning South African identity, which saddens me a bit. I often cry for my beloved country and miss my mother and siblings and many other things about my homeland. Maybe one day I will become a swallow and return more regularly. As for British politics, I feel European and doubt I will lose this identity any day soon. I have too many continental friends and colleagues who shape my worldview.
Here’s to wishing myself happy anniversary and to the next 25 years as a Londoner!
Labels: 25 years, anniversary, London