Today the MS Society published a consensus report on early treatment for people with relapsing remitting MS (RRMS). The report recommends that people with RRMS start treatment with a disease modifying drug soon after diagnosis, ideally within six months. The MS Trust was part of this consensus building project and we very much welcome this report.
The consensus report has attracted some media coverage, which is great for raising the profile of MS and more awareness in the general public. There has also been a bit of mis-information about MS in some of the reporting. You might want to check out the MS Trust’s myths and facts about MS and share this with others to make sure that we all have the right facts about MS.
Is there really a ‘wait and see’ culture around treatment for RRMS?
As ever, there is no straightforward answer to that question. It is certainly true that the proportion of people with RRMS who are taking a disease modifying drug (DMD) in the UK is around 50 per cent, and that this rate is lower than other countries. It's also true that the proportion of people with RRMS taking a DMD varies across the UK (the MS Trust will be publishing some data on this in November).
So there are definitely some issues about prescribing. What we don’t fully know are the reasons why. Some of this might be due to how different neurologists interpret the data about the effect of DMDs over the short and the long term. It might be due to the preferences of individual people with MS. Taking a DMD is a long-term commitment. The drugs are powerful and carry risks and side-effects, as well as benefits, and understandably many people with MS are hesitant about starting treatment.
In some cases, it may be because people with RRMS are not in contact with an MS neurologist or MS specialist nurse and so may not be getting the most up-to-date information and advice. The MS community needs to work together to understand more about why prescribing of DMDs varies and what we need to do to improve services to support people getting the treatment that’s right for them.
Of course, there are also two possible types of ‘wait and see’. One is about whether to start treatment at all. The other is whether the DMD is working. In both cases, the evidence is certainly growing that the best approach is to get started soon after diagnosis, and then move onto a different treatment if there are still relapses or important changes on brain scans. Thisproactive approach is much more possible to achieve now that there are many more DMDs to choose from.
Working in partnership
What I really want to stress is that your MS team are on your side and want to make sure that your care and treatment are right for you. Your MS neurologist and MS specialist nurse work to understand how active your disease is (relapses and symptoms as well as brain scans) and to provide you with information and support to choose whether to start a DMD and which one to take.
The MS Trust has also just re-launched MS Decisions to help people with RRMS understand their treatment options, compare different drugs side-by-side and work with their MS team to make the choice that best suits their needs. Check it out.
What about people who won’t benefit from taking a DMD?
Currently, DMDs are only for people with RRMS (or those who have secondary progressive MS and also are still having relapses). The reality is that there are more people living with MS right now who won’t benefit from DMDs than who will. This means that alongside making sure services are right for people with RRMS, we need to be equally focused on people with progressive forms of MS. This means we have to take a broad look at what people with MS need, whatever stage or type, and make sure that everyone has access to the best possible care. That includes neurologists, nurses, physiotherapists and occupational therapists, all with expertise in MS. Our GEMSS programme is focusing on that right now, working with MS teams from across the UK to make sure that they have the tools and support they need to make sure high quality care is available to everyone with MS.