An article I published on LinkedIn the other day: Or... Why Aren't MS Patients Worth It? Recently, I was sent a genetic test that won much acclaim at ECTRIMS 2023. The test is simple, fast, and unequivocal. Why is it important? As one of the 2.5 million plus Multiple Sclerosis (MS) patients in the world, it tells me something simple but incredibly valuable: Am I at greater risk than most patients on immunosuppressants in developing Progressive Multifocal Leukoencephalopathy (PML)? This risk affects everyone on a monoclonal antibody but especially if you take natalizumab/natalizumab-sztn (Tysabri/Tyruko). The test tells me whether I have one of the four gene variants that mean my risk of developing PML is 10x more than normal, and PML is a terrifying brain infection with a low survivability rate (30-50% mortality). Even if you do survive you are left with varying degrees of irreversible permanent brain damage. Currently, PML risk is conducted as a point-of-time test by measuring JC antibody levels in your blood during the treatment period. This genetic test doesn’t replace that test, but it does tell you and your neurologist ahead of time, or before treatment starts, whether you carry the 10x risk and require closer monitoring or having a discussion about alternative treatments. The test has been developed by an eminent British Neurology researcher, Dr. Eli Hatchwell, and establishes a simple fact that is unchanging; does the patient carry one of the four gene variants that elevates their risk 10x. As if more evidence is required, the doctor who invented natalizumab, Dr. Larry Steinman thinks this test is an important new tool: “It’s critical to be able to identify genetic mutations that greatly increase a person’s risk of this devastating infection. Preventative screening for these variants should become part of the standard of care. I wish we had more powerful tools like this for other therapies.” What MS Neurologist wouldn’t want to know, either ahead of time or during treatment, that a patient has a 10x greater risk of developing PML? Blood tests and MRIs are all lagging indicators whilst this test establishes a simple fact that is unchanging. Does the patient carry one of the four genetic variations that elevates their risk 10x? All of which leaves me wondering…why aren’t all the MS neurologists taking advantage of this opportunity to get an insight into the potential for future issues, instead of just relying on lagging indicators like blood and MRIs? As ever, I’ll bet it is because they aren’t the ones being threatened by PML. My bet is that if the PML gun was pointed at their head they’d be using this test at every opportunity. #PML #JCV #RiskManagement #MultipleSclerosis #monoclonal #patientadvocacy #patientsmatter