ChariotMS, the world’s first clinical trial to test whether Mavenclad (cladribine) can slow the worsening of upper limb function in people with progressive multiple sclerosis (MS), has now enrolled 100 participants. The announcement means the Phase 2 trial (NCT04695080) has reached 50% of its target recruitment goal.
U.K.
It transpired that I’d gone and fallen at the worst possible time, landing myself in the midst of a major news story. I’d been aware that what had toppled me was most probably my persistent urinary tract infections (UTIs). They were different and numerous, and acted like allied combatants…
You might be wondering why a Yank like me is writing about multiple sclerosis care in the United Kingdom. It’s because a survey caught my eye the other day that I think deserves a closer look. The survey, conducted by the MS Trust and reported by MS News…
Among healthcare providers in the U.K., considerable variation exists in marking the transition from relapsing-remitting multiple sclerosis (RRMS) to secondary progressive multiple sclerosis (SPMS), a study based on interview responses reports. Neurologists and nurses with MS specialties also expressed a reluctance to label patients as having progressed to…
As usual, I’ve gone for what I hope to be an intriguing headline, because you’ve got to grab a reader by any means necessary. If you’ve read this far, I’m winning! This saga goes back well over a year, when my neurologist suggested I participate in a clinical trial for…
I’m pretty sure that wherever you are, you’re responding the same as we all are to the ravages of the latest Bond villain, that dastardly omicron variant of the coronavirus! OK, pipe down, Kiwis. The whole world knows the extreme lengths you’ve gone to avoid a massive COVID-19 outbreak. If…
The COVID-19 pandemic brought extra strain to already-stretched neurology services across the U.K., markedly affecting multiple sclerosis (MS) care and patients’ health, according to a report from the MS Society. These findings were consistent with those of a 2020 report from U.K.’s Neurological Alliance showing that the pandemic…
I was tryin’ to find lots of things to do while being trapped at my desk because of a wheelchair mishap. Apologies for my adaption of Bing Crosby’s rendition of that happy-go-lucky song “Busy Doing Nothing.” I was trapped because at 8 p.m. last Friday night, the wire that…
After some delays due to the COVID-19 pandemic, the Phase 2/3 clinical trial evaluating whether Mavenclad (cladribine) can slow hand and arm function worsening in adults with progressive multiple sclerosis (MS) and very limited walking abilities, has recruited its first patient. The study, ChariotMS (NCT04695080), aims to…
Mayzent (siponimod) has become the first oral medication to be approved for people with active secondary progressive multiple sclerosis (SPMS) in England and Wales. Following this decision by England’s National Institute for Health and Care Excellence (NICE) — which reversed its opinion announced in June — the…
A likelihood of depression is two to three times higher in multiple sclerosis (MS) patients in the U.S. and U.K. than in similar groups of people in these countries without the disease, a study reported. This risk was also “most evident in the first five years after MS diagnosis” among…
Specialist inpatient rehabilitation is a cost-effective strategy that can improve the clinical outcomes of patients with multiple sclerosis (MS), particularly those at more advanced stages of the disease, a study in the United Kingdom (U.K.) found. The study, “Cost-efficiency of specialist inpatient rehabilitation for adults with…
New data from Public Health England (PHE) and the U.K. MS Society show that the number of people with multiple sclerosis (MS) in the United Kingdom is now more than 130,000 — about one in every 500 people living in the country. This is an increase of…
“My arm feels dead.” Not the worst thing in the world, you would think. But what it meant changed my life forever. I’m Jessie Ace, an English writer from Swadlincote, a town in Derbyshire. I titled my column…
I was struck down by sclerosis in 2006 — literally. I was playing tennis and ran to return a drop shot. I never made it, but I did drop myself and rupture my right shoulder. It was so severe that it took two operations to rectify. The first few years…
Nurses who specialize in treating multiple sclerosis (MS) patients in the U.K. are handling heavier caseloads than recommended or preferred, resulting in patients going without the necessary care and support they deserve, the MS Trust reports. Particularly, the 2018 report notes that newer treatments require more complex and careful monitoring. However, it…
As I’m writing this, my right arm is tight and my right hand is cramped up. I was out working last night and night work always shatters me the next morning when I awaken with exacerbated MS symptoms. Luckily, I never learned to be a copy typist when I…
Multiple sclerosis (MS) that appears to be "genuinely benign" 15 years after diagnosis is evident in a small number of patients, a large population-based study from the U.K. reports. But, its researchers note, the term “benign” is often not clinically accurate as used, because it is based largely on perceptions of disease impact. The study “How common is truly benign MS in a UK population?” was published in the Journal of Neurology, Neurosurgery & Psychiatry. The concept of benign MS is controversial, especially among clinicians. Still, long-term epidemiological studies have consistently identified a small fraction of patients whose MS progresses very slowly over a long span of years. Determining the prevalence of this type of MS in the population has been difficult, as estimates can vary significantly depending of the definition of “benign” that is adopted. Researchers sought to determine an accurate estimate of benign MS in the U.K. population, using a rigorous and comprehensive clinical definition of a truly benign disease. This definition included minimal physical disability (EDSS score of less than 3), and no significant fatigue, mood disturbance, cognitive impairment or interrupted employment in the absence of treatment with disease-modifying therapies over 15 years or more years after symptom onset. They screened an U.K. population-based registry containing data on 3,062 MS patients to identify those with "unlimited walking ability" 15 or more years after diagnosis. A representative sample of 60 patients from this pool was analyzed (45 women and 15 men, mean age of 57); they had a mean disease duration of 28 years. Nine out of these 60 (15%; 8 women and one men) fulfilled the study’s criteria for truly benign disease. These nine people had a mean age of 27 at symptom onset, a median EDSS disability score of 1.5 (minimal signs of disability), and a mean disease duration of 31 years. "Those nine individuals with truly benign MS all remained in a relapsing–remitting state," the study noted. "However, only two out of nine showed disease arrest within the first decade; the remainder all continued to experience relapses well into their second or third decade of MS," but the rates of such relapses were low. MS in the remaining patients was not classified as benign, mostly due to evidence of cognitive difficulties (57%), and the disease's impact on employment status (52%) with many taking early retirement. Based on these results, a population frequency for "benign MS" under the definitions used was estimated at 2.9%. But the researchers noted that a large proportion of patients (65%; 39 patients out of 60) reported their disease as benign, according to a lay definition. Their self-reported status poorly agreed with the clinical assessments done throughout the study. "There is no accepted definition to offer patients when exploring whether they feel their MS is benign; the definition we chose incorporates the fundamental principles of low impact on a person, absence of complications and a favourable outcome and is in line with definitions provided by third-party support groups," the researchers wrote. Many considering themselves with benign disease did so based on their "perception" of their disease, the team added, and one that "appeared to be driven as much by mood, fatigue and bladder function as by physical ability." “In conclusion, after detailed clinical assessment, a small minority of people with MS appear genuinely unaffected by symptoms after 15 years,” the researchers added. They also called attention to the fact that EDSS-based definitions of benign MS and the inconsistency between patient and clinician perception of benign MS compromise the use of the term ‘benign’ in clinical practice. They also emphasize that studying individuals with benign MS “has the potential to uncover clues to mechanisms underlying favorable outcomes in MS, provide insights into new therapeutic targets and have implications for patient counselling, individual patient management and the construct of clinical trials.”
In the United States, the government can do very little to control the costs of our expensive MS medications. In the United Kingdom, it’s a different story. The U.K. has an organization called the National Institute for Health and Care Excellence, better known as NICE. NICE provides healthcare…
Britain’s Multiple Sclerosis Trust is asking patients to help them get the National Health Service to cover Ocrevus (ocrelizumab) as a treatment for primary progressive multiple sclerosis, or PPMS. The key step is trying to persuade the National Institute for Health and Care Excellence to recommend that the health service…
Brabio (glatiramer acetate injection), the first generic alternative to Copaxone for relapsing multiple sclerosis (MS) patients, was recently launched in the U.K. at an equivalent higher dose, its maker, Mylan, announced. Similar to Copaxone — developed by Teva — Brabio is now available at a 40 mg/ml dose. Both medications are…
I’m used to seeing insurance companies here in the United States make decisions about MS therapies, including refusing to pay for certain treatments unless other, less expensive ones are tried first. These, of course, are decisions that should be made between patients and their doctors, not by insurers.
Britain’s National Health Service should cover the multiple sclerosis therapy Extavia, the National Institute for Health and Care Excellence (NICE) has recommended. The health service usually follows the institute’s recommendations. So NICE’s endorsement means there is a good chance the health service will begin covering the Extavia prescriptions that…
About two years ago, a report by the European Multiple Sclerosis Platform stated that only 21% of MS patients in the United Kingdom were receiving any kind of disease-modifying therapy. This is compared to 40% in France and 69% in Germany. Now, the U.K. branch of pharmaceutical giant Sanofi has published a report of its own, "The Missing Pieces." The report tries to answer, "Why is this so?" Here are some of the answers that were received online from a small group of healthcare professionals and MS patients: Nearly three-quarters of U.K. healthcare professionals think that people with MS face delays in starting on disease-modifying treatments (DMTs). Nearly one-quarter of MS patients there reported being unaware of some treatments that could help delay the onset of disability. Only half of people with MS say disability was discussed with their healthcare professional when they were first diagnosed, yet 69% of the healthcare professionals say it was discussed. Only a third of those patients say that "disability" is discussed in their regular MS appointments. Two-thirds of people with MS say that maintaining independence is their main treatment goal, followed by reducing relapses. The report also says that healthcare professionals believe the primary reason that DMTs are slow to be prescribed is lack of access in the U.K. to neurologists who specialize in MS. And, it says, 62% of MS specialist nurses and 47% of MS specialists thought this delay is also because of a shortage of healthcare facilities needed to deliver DMTs. Now, it needs to be noted that this survey involved only 100 MS specialist healthcare professionals and 120 MS patients in the U.K. And, as mentioned earlier, the survey was conducted by Sanofi, which claims to be the fourth largest pharmaceutical company in the world. Sanofi makes two big-time MS drugs: Aubagio (teriflunomide) and Lemtrada (alemtuzumab). Naturally, it has a vested interest in seeing that MS patients are treated with DMTs. (Full disclosure: I recently was compensated by Sanofi Genzyme to attend a meeting of "digital influencers" that the company held at its U.S. headquarters.) But drug sales aside, a case certainly can be made for treating MS patients with DMTs quickly after patients are diagnosed, and many drugs currently on the market have shown that they are able to modify the course of MS. And there's a case to be made about a need for better patient-healthcare provider communication. So, my question is: How do MS patients in the U.K. feel about access to DMTs? And to MS care, in general? Is this small report correct about the lack of knowledge by patients about their treatment options? Is it correct about the lack of MS specialists and resources in the U.K.? Do MS patients outside of the U.K. have similar concerns?
The Maccabees rock band will play an exclusive gig in London to raise funds for the United Kingdom’s MS Society, supporting the organization’s mission of trying to end multiple sclerosis. A key reason for the concert is the group’s passion about the disease. Band members Felix and Hugo White…
News
MS Trust Project to Bring Needed Services to People with Advanced MS Wins October Club’s Support
The British fundraising group The October Club and The MS Trust, a U.K. multiple sclerosis research and support organization, have announced an ambitious plan to potentially help thousands of advanced MS patients in need of services. Composed of people working in the financial equity industry in London, The October Club raises money for a different charity each year through…
A high daily dose of simvastatin improves multiple sclerosis patients’ cognitive function, according to a new analysis of Phase 2 clinical trial results. The British team that did the research will start a study soon on whether simvastatin, which goes by the brand name Zocor and other labels, can also slow…
The British government announced on Oct. 31 that a new Personal Support Package will be available for people with health disabilities, such as multiple sclerosis (MS), ensuring they receive personalized health and employment support. A Green Paper – a government document for consultation – is available online to open…
The MS Society in the United Kingdom is funding a new project at the University of Glasgow, in Scotland, to examine if heparin, a drug widely used for stroke patients, can repair neurological damage in people with multiple sclerosis (MS). MS is a progressive, debilitating, immune-mediated, neurodegenerative disorder in which…
Virtually all the talk about availability of HSCT1 as an MS treatment includes the need to travel long distances to other countries, but U.K. residents can receive the treatment in London, avoiding the journey overseas. What’s more, it is provided through the country’s social National Health Service (NHS) so, like…