The recent AIMS Charity AHSCT meeting was a resounding success, providing an invaluable platform for people with multiple sclerosis (pwMS) to learn about autologous hematopoietic stem cell transplantation (HSCT), a potentially life-changing treatment.
The meeting provided an opportunity for pwMS to engage with experts, ask questions, and gain a deeper understanding of HSCT.
While some may argue that the meeting only presented one side of the HSCT debate, it's important to recognise that HSCT is a relatively new treatment for MS in the UK. As such, there's still much to learn, and the meeting served as an excellent forum for pwMS to stay abreast of the latest research.
Moreover, the meeting was not intended to be a scientific debate. AIMS's primary focus was on providing pwMS with information and support. This was clearly communicated in the meeting invitation, which emphasised the opportunity to learn from experts and fellow pwMS.
While private HSCT clinics were present, their role was not to promote their services but to provide information and answer questions from pwMS. These clinics were complemented by speakers from the NHS, including Professors Snowden and Sharrack from the StarMS trials, and Professor Giovannoni. All speakers were given an open platform to share their perspectives, fostering a balanced and informative discussion.
One of the highlights of the meeting was the discussion on CAR-T cells, a novel immunotherapy approach gaining significant traction in the field of MS treatment, from Dr Roldan Galvan, who is part of the STARMS trials.
Dr. Gavin Giovannoni, previously provided a layman's explanation of CAR-T cells in his MS Selfie Blog, highlighting their potential as a transformative therapy for MS.
Dr. Giovannoni explained that CAR-T cells are engineered T cells, a type of immune cell, that are specifically programmed to target and eliminate B cells, a type of immune cell associated with MS disease progression. He emphasised the potential of CAR-T cells to penetrate the blood-brain barrier, a protective barrier that often hinders the effectiveness of traditional therapies, and directly target B cells within the central nervous system, the primary site of MS pathology.
While CAR-T cells hold immense promise, there are challenges associated with this therapy. The high cost of treatment (over £250k per infusion) potential adverse effects, such as cytokine release syndrome, and the need for further extensive research to optimise long-term efficacy are factors that need to be considered.
Non Myeloablative HSCT is the best thing available—but big pharma cannot commercialise it. However, Neurologists will be able to buy CART from a company, making it a commercially viable option - unlike HSCT. It would be a travesty if commercial companies hijacked the field with Car-T unless they can demonstrate superiority over HSCT with long term data and improved toxicity profile and less delayed complications.
The meeting also explored the EBV hypothesis, which suggests that the Epstein-Barr virus (EBV) may play a role in triggering MS. While further research is needed to definitively establish the link between EBV and MS, the potential implications of this hypothesis are significant. If proven, it could open up new avenues for prevention and treatment strategies.
The main aim for all of us is to stop people getting MS and for those who have it to stop them being too affected by it. What the medical profession should do (and what patients should expect) is to explore all avenues as thoroughly and as quickly as possible to come up with the best solution.
As one of our speakers stated in his presentation - we still don’t fully understand what causes MS; we think EBV is important and that currently aHSCT is the most potent tool we have to treat it. In the future, maybe 20 years from now people, may look at what we are doing and say what were you thinking? And that is the nature of scientific progress.
In essence, the AIMS Charity AHSCT meeting was a valuable resource for pwMS, achieving its intended goal of providing education, support, and a platform for engagement. While there's always room for improvement, AIMS is committed to incorporating feedback into future events.
The footage from the meeting will be made available in 2024, adding to AIMS's extensive library of resources. AIMS extends its heartfelt gratitude to everyone who contributed to the event's success, particularly the AIMS trustees, Karen Davies, Lisa Sabotig, Mark Lycett, Rob Robb, Gatsby Band, Cutlers Hall, and all the wonderful speakers.
Together, we can continue to empower pwMS with knowledge and support, paving the way for a brighter future.
Photo: (C) Mark Lycett
Back Row L-R - Professor Gavin Giovannoni, Dr David Hunt (NHS Scotland), Dr Elisa Roldan Galvan, Dr Denis Fedorenko
Front Row L-R - Professor Basil Sharrack, Dr Guillermo Ruiz Arguelles, Dr Richard Burt, Professor John Snowden, Dr Majid Kazmi