I thought I’d write a post about my views on the treatment escalation model for Multiple Sclerosis widely used in the UK and throughout the world.
There are currently 13 Disease Modifying therapy drugs available in the UK and these are categorised by efficacy in to three groups: Moderately effective, More effective, Highly effective.
Potential side effects are more severe for the drugs with higher efficacy.
Discussing DMTs is always challenging as they all seem to have such complicated, hard to pronounce names and on top of this, most are known by two names – the generic drug name and the brand name. Bear with me if you can!
I have cobbled this together from the MS Trust website, to show the drugs in their three categories …
Further information can be found here … MSTrust
Most MSers are offered DMTs following an escalation model that looks a bit like this …
Patients are initially offered first line treatments, also described as “moderately effective” drugs. If they continue to progress or relapse, or are unable to manage side effects, they are then offered an alternative first line treatment. As these drugs can take many months to have an impact, each cycle of trying and failing can take up to a year or more.
Once first line treatments are deemed to have failed, patients are offered second line treatments and eventually third line or “highly effective” treatments.
By this time, several years may have passed and the MSer may have acquired significant permanent damage to their brain and spinal cord, resulting in long term disability and daily difficulties.
DMTs don’t treat symptoms, reduce pain or improve disability. In a sense they are an attempt to “future proof” and reduce further disease progression and damage to the central nervous system. Many MSers and indeed, neurologists are now asking questions about why patients can’t be offered HIGHLY EFFECTIVE treatments from the onset of the disease. Imagine being offered a treatment that has a higher likelihood of reducing relapses and progression and therefore reducing damage? It makes perfect sense to me.
For many, the most effective drugs will control their MS and allow them to live a normal life. For others, they will still have occasional breakthrough disease, which can then be addressed by one of the lower efficacy drugs.
Several high profile forward thinking neurologists are now actively promoting this de-escalation model as a more effective treatment plan than the current escalation model. Some are also including HSCT as a first line highly effective treatment.
Some neurologists are no longer offering first line treatments at all. These are mostly drugs developed 20-30 years ago which, at the time, where the only treatments available. Newer more effective drugs have become available but for some reason, these drugs with low efficacy are still being broadly offered. This doesn’t seem to happen in relation to treatments for other conditions. When newer, better treatments are developed, the older less effective treatments are relegated to history. This hasn’t happened with MS and it’s really not clear why.
Change is slow to come and all the time each person with MS is experiencing more damage to their brain and spinal cords. My own neurologist is stuck firmly to the escalation model, meaning it could be several years until I qualify for highly effective treatments …by which time I could be experiencing much worse symptoms, but may be too old to be considered for those treatments.
Many people with MS are frustrated with the system and the neurologists who care for us. The disease is like a ticking time bomb and we each have no idea how it may progress over time. Even those whose disease appears inactive, may be experiencing silent progression in the back ground. Leaving us to deteriorate whilst denying us the most effective treatments is devastating.
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Tomorrow, this gorgeous young man is taking part in a sponsored fun run to help raise funds for my treatment. Good luck Bobby …you are a superstar!
