Multiple sclerosis is considered a relatively rare disease, but a recent MS guideline published by the National Institute for Health and Care Excellence stated that with more than 400,000 cases in the US alone, MS has become the leading cause of physical disability in working age adults.
Although there is no known cure for MS, the treatment options, regulation of symptoms, and slowing of the progression of the disease have improved drastically in the last 20 years. New research has suggested that MRI scans can be used to help forecast the progression of an individual’s case of MS. These scans are already used in the diagnosis stage, and may have other useful applications in the slowing or prevention of the spread of MS.
Furthermore, the US Food and Drug Administration (FDA) has approved a new drug therapy that can slow the progression of chronic forms of MS dramatically. The European Medicines Agency (EMA) is currently reviewing this drug therapy, and expects to announce a decision come Autumn 2017.
Sanofi Genzyme, a biotech company, supported a roundtable discussion to discuss the advancements being made in the treatment of MS, and more importantly, how to ensure that patients diagnosed with MS are receiving the best care and access to the best information and treatments.
Getting Diagnosed Early with Multiple Sclerosis
One of the topics addressed in the roundtable discussion was the process by which a patient is diagnosed with MS. 85% of individuals will be diagnosed with relapsing-remitting MS (RRMS), a form of MS in which symptoms fluctuate between improving and worsening over time. About 65% of those diagnosed with RRMS will progress into secondary progressive MS, where relapses are far less likely, and disability steadily increases. 10-15% of individuals diagnosed are diagnosed with primary progressive MS, in which symptoms progress over many years without remission.
The path to diagnosis can be a long and drawn out process. Every diagnosis begins with the General Practitioner. A GP cannot make an MS diagnosis, but they can refer a patient in question to a neurologist, who can then make the official diagnosis. The variable nature of early stage MS can be problematic in this regard, when symptoms can appear and disappear over a timespan of several years. According to Debbi Quinn, policy advisor to the UK MS Specialist Nurse Association, GPs are currently “in a very difficult position… a lot of the time symptoms will appear like a trapped nerve.”
Diagnosis is further complicated where there is a shortage of neurologists to be referred to. Hospitals without neurology departments and without MRI technology are disadvantaged in the two most relevant aspects of a diagnosis. The UK has approximately 1 neurologist for every 100,000 citizens, while the rest of Europe stands at approximately 1 for every 25,000.
Currently, the delays in GP recognition of MS red flags, the delays in referral to a neurologist, and the delays of being diagnosed by neurologists can result in more than a year of waiting to be diagnosed. Funding constraints make it difficult for an urgent referral system to be put into place, and resource scarcity makes it difficult for patients to access more expensive treatment options.
Drug Therapies and Information Availability
Although there are several drug therapy treatments available to those diagnosed with MS, the adoption of these treatment options are fairly low. MS Society interim director of research Susan Kohlhaas attributes this in part to the relative lack of information and patient-specialist communication. She believes that “when people have access to MS nurses and neurologists and feel informed about the treatment out there, they’re much more likely to be on treatment.”
The drug recently approved by the US FDA is called Ocrelizumab. It works by targeting B cells—an immune cell responsible for targeting the myelin coating around nerves—and prevents them from having a damaging immune response. This drug therapy was shown in trials to be particularly effective in patients with relapsing MS, and in patients with primary progressive MS, the drug had positive effects on reducing brain atrophy and disability progression.
Even with options such as Ocrelizumab available to the public, the lack of information, funding and interest in MS remains a prevalent issue. Dr. Jeremy Hobart, a consultant neurologist at Plymouth Hospitals and NHS trust member suggested lowering the investigation threshold in order to include more individuals who have MS in the pool of diagnosed individuals. This brought forward an issue of funding—a continual concern in light of the fact that there is no limit on the number of referrals that GPs can give.
Others turned to the possibility of offering off-label prescriptions to patients. These medicines would be prescribed on a foundation of evidence and the patient’s best interests, solely on their approval, but the immediate concern is in prescribing medicines outside of a practitioner’s term of license. Many felt that the current parameters in licensing prescription drugs have prevented exposure to potentially toxic or understudied drugs.
In the end, the roundtable discussion generally agreed that treatments should be discussed and agreed upon by both the patients and the practitioners. Some may immediately seek the highest and most expensive form of drug therapy, while others in variable circumstances may seek alternative solutions.
Many simply opt out of treatment on the grounds that they are not adequately informed, and that they simply do not want to receive treatment. George Pepper, co-founder of a social media site for MS patients, says: “I don’t believe that the implications of that decision are made clear—it’s hugely important to engage people with MS to empower themselves as early as possible.”
Continuing to Improve the Course of MS
The confidence expressed by members of the roundtable discussion should be clearly communicated to those with MS throughout the course of their lives. As new solutions become available, individuals should feel that they have a variety of options to manage the course of their individual disease and should feel empowered to slow or alter it.
Dr. Raju Kapoor, consultant neurologist at the National hospital for Neurology and Neurosurgery, believes that “we are in a better place to control the disease.” This is in light of both recent and prospective developments in fighting progressive forms of MS.
Kapoor also sought to improve GP-specialist communication, stating: “it is rare for a GP to contact me directly, but when they do it’s actually quite rewarding because you can solve things very fast.” The benefits of a direct line of communication between GPs and specialists were echoed by other members of the discussion, who believe that such communication speeds up the diagnosis process significantly.
Addressing the issue of funding and increased costs of treatments, and addressing the fact that MRI scans can cost upwards of £130, Kapoor made a brief case for health economics. As mentioned earlier, MS is the leading cause of physical disability in the workplace, and Kapoor believes that “if you remove the lag [in diagnosis], we will save money” in that individuals will be able to stay employed while enjoying the benefits of treatment and early diagnosis.
The roundtable discussion was concluded in optimism, with many believing that the ability to alter the course of MS could be made widely accessible to the public in the near future. A consensus was made that treatment should always be rated for its effectiveness, regardless of the patient’s individual case or type of MS.
George Pepper co-founded Shift MS, a social media site for those living with MS, following his own diagnosis with a severe case of rapidly progressive MS. He believes that the spread and availability of information is critical to the successful treatment and adoption of treatment by recently diagnosed individuals moving forward.
In the words of Dr. Ann Robinson, general practitioner, “Anything that makes access to neurologists and care of patients better is going to have an impact on people living with MS.” This consensus concluded the roundtable discussion, and suggests that the future is hopeful for those already diagnosed, and for those who may one day be diagnosed.