Hypocrisy or not?
What do you call a neurologist who states if they had MS they would want to be treated with alemtuzumab or AHSCT, but don't actually use alemtuzumab or AHSCT in their MS clinical practice?
NHS England and other healthcare systems collect prescribing data on multiple sclerosis (MS) disease-modifying therapies (DMTs). In the NHS, the data is collected via a national database called blueteq. This data is a rich seam and can be mined. I have recently seen summary data from blueteq. It shows dramatic variation in prescribing patterns across England. Does this matter? Well, it depends on whether you are someone with MS or not. Or if you care for someone with MS. Or if you care for populations of people with MS.
The variation is particularly problematic on the edges of the adoption curve, with many MS centres in the UK not prescribing alemtuzumab or referring their patients for AHSCT (autologous haemapoietic stem cell therapy). Does this matter? It does because it means that many patients being managed in these centres are not offered the most effective therapies. And their patients are being denied access to a potential MS cure.
I am aware that many people don’t like using the C-word in the context of MS, but if MS has a cause, for example, EBV or autoimmunity, we should be able to cure it. A minority of people with MS (pwMS) treated early with alemtuzumab, or AHSCT, are in long-term remission 15+ years after being treated. When does long-term remission become a cure? We used the 15+ year remission period as a working definition of an MS cure, but since defining an MS cure, nobody else has taken up the subject and run with it. Maybe it is time to rekindle the debate.
I am not prepared to shy away from discussing curing MS and have covered the issue many times before. Please see ‘To cure or not to cure MS, that is the question’ (24-Aug-2023). I have always argued that unless we define what an MS cure looks like, we won’t be able to find it. Many years ago, an MRI study of siblings of pwMS showed that about 10% of them had lesions on their MRI scans compatible with demyelination or asymptomatic MS. However, only about a quarter of these siblings would go on to develop MS. Is it just possible that the siblings who don’t develop MS, despite having lesions on MRI that look like MS, have spontaneously cured themselves of whatever causes MS? Similarly, it is estimated that about 25% of people who have pathological evidence of MS at post-mortem are never diagnosed in life. This means they either had asymptomatic MS or, if they had symptoms, they were never investigated for MS. The other possibility is that they cured themselves of the cause of MS before it had time to present as a clinically isolated syndrome (CIS) or MS. What I am saying is that some people may be spontaneously cured.
Over the years, when I have given talks on the early effective management of MS, the concept of flipping the pyramid and the hit-hard early approach to treating MS, I have asked the audience if they had MS how would they want their MS to be treated. It amazes me how many neurologists, knowing what they know about MS, would want to be treated with alemtuzumab or AHSCT. Despite this, many don’t offer their patients alemtuzumab or AHSCT. Is this hypocrisy? I suspect not. The human brain is hard-wired to be optimistic, which is why I use the gambler’s dilemma as an analogy. No gambler places a bet or goes into a casino to lose money; they always believe they will be the one to win the jackpot. Most neurologists and patients who have MS think they are going to have benign MS with a good prognosis. Nobody is expecting to end up disabled, unemployed, etc. This may be why neurologists avoid discussing the long-term prognosis of MS and what happens to pwMS with untreated or under-treated MS. I take the position that unless you tell pwMS about how bad MS can be, how can they make an informed decision about the treatment of their disease?
I refer to my colleagues who are unprepared to offer and use alemtuzumab and HSCT as the ‘refuseniks’. I can only assume they know they are putting themselves and their institutions at risk from a legal challenge. When NICE (National Institute of Health and Care Excellence) was created, it was done via an act of parliament. NICE aimed to eliminate the curse of postcode prescribing and variable treatment access. Therefore, if an MS therapy has been NICE approved, the NHS is legally obligated to offer people the specific treatment if they are eligible. This does not occur.
I recall a neurology colleague of mine stating that they don’t offer alemtuzumab to patients in the centre because it is too risky. My response was too risky for who: the patient or yourselves? Why are neurologists still so paternalistic? Not allowing patients to choose their treatment is against one of the central tenets of modern medicine. It is not the neurologist or the institution where the neurologist works who are taking a risk when someone is treated with alemtuzumab; surely it is the patient who is taking the risk.
From my experience, shared decision-making is often only shared until something goes wrong, and then the responsibility of the decision is often laid at the feet of the HCP. This has happened to me several times in my career. This may be one of the reasons why neurologists err on the side of caution.
I hope that when national audit figures from the NHS’s blueteq database are published, those centres not prescribing alemtuzumab or offering referrals for HSCT will be exposed. If you are not using alemtuzumab or HSCT in a proportion of your patients with highly active MS, then you and your centre are not managing MS the way it should be managed in 2024. Not all of my neurology colleagues will agree with me. Do you?
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Please note that the opinions expressed here are those of Professor Giovannoni and do not necessarily reflect the positions of Queen Mary University of London or Barts Health NHS Trust. The advice is intended as general and should not be interpreted as personal clinical advice. If you have problems, please tell your healthcare professional, who will be able to help you.