Managing MS

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Managing MS Gaby Mammone: An ambassador with the MS Society of Canada, Mammone shares her insights on living a life filled with positivity and kindness. Read more on healthinsight.ca.

Equity and Inclusion Are Crucial in Access to MS Care

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here are 90,000 Canadians living with multiple sclerosis (MS) — an often-debilitating disease that can affect vision, mobility, fatigue, memory, and more. It’s a disease that doesn’t discriminate — it can affect anyone at any time, often in the prime of their lives. So why do we still see health inequities and systemic discrimination within the health care system when it comes to chronic diseases like MS? “For years I was told that this was likely coming from my European ancestry and not my Métis ancestry,” says Rheanna Robinson, who was diagnosed with MS in 1997 at 19 years old. “It felt like MS was being categorized as a white person’s disease and it was unusual that I was living with it.”

As a Métis woman from Smithers, BC, she knew this wasn’t the case. But with a lack of research and resources representing diverse communities across the country, a comprehensive perspective about the impact of MS on different populations isn’t necessarily well-understood.

This has a trickle-down effect on access to research and MS-related health services.

As part of the MS Society of Canada’s work, the organization looks to help fund research into the cause of MS, working toward a world free of MS — for all Canadians. Recent studies examined risk factors for MS in immigrants within Canada. These studies looked at MS incidence, mortality rates, and access to health services to understand differences in immigrant populations as compared to long-term

residents. But there’s more work to be done.

“I see gaps in opportunities for Indigenous people, for example, to share their experiences.

Modifying inclusion in the research landscape is a good first step,” says Robinson. “The MS Society and the critical work it supports have had a profoundly positive influence on my life. Although my disability continues to drastically accumulate, I believe in science and together, I know there is much to accomplish toward a cure.”

To learn how you can help Canadians living with MS, visit mssociety.ca.

This article was sponsored by the MS Society of Canada.

Strategic Account Manager: Madison Trajkovski Strategic Account Director: Jessica Golyatov Country Manager: Nina Theodorlis Content and Production Manager: Raymond Fan Designer: Lauren Livingston All images are from Getty Images unless otherwise credited. This section was created by Mediaplanet and did not involve Macleans or its editorial departments. Send all inquiries to ca.editorial@mediaplanet.com.

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N E W M O M EL I S A B E T H L ÉG ER , W I T H H ER EI G H T- M O N T H - O L D DAU G H T ER .

Ensuring Continuity of MS Care During the Pandemic Managing multiple sclerosis is a large undertaking with many moving parts. During the global pandemic, patients and doctors alike have had to learn new tricks to ensure continuity of care.

D.F. McCourt

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ultiple sclerosis (MS) is a context when the pandemic arrived and changed complex disease. It’s serious, everything. As a new mother, Léger found inteit can cause progressive dis- grating technology into her care an essential ability, it’s incurable, and it tool for maintaining a sense of normalcy and presents differently in each patient. The life- control. “I’m using the Aby app,” she says. “I use long task of managing the it pretty much every day like disease requires vigilance a personal journal to log my and diligence, as well as routine and also to reach out to a nurse when I have quesan individualized plan that tions. What I like about it is considers patient-disease, and treatment-related facI really think that that I can send a report dirtors. Thankfully, research ectly to my neurologist so he managing my MS through can see what I log in.” into new innovations in MS this has helped me improve is ongoing and advances in More than ever, remote the way I live. [...] What I’m technologies like videodisease-modifying thermost looking forward to apies continue, but keeping conferencing are essential to after the pandemic is the disease well-managed continuity of care. “During reconnecting with others. is an art as much as a sciCOVID we’ve been, if anyence, and success depends thing, more available to on a broad and holistic approach that doesn’t patients,” says Dr. Schabas. “The difference is that simply begin and end with selecting the right those interactions are now taking place on the teletreatment. phone or via telehealth. This has been good, but “While treatment is an important part of there are drawbacks that will only become obvious managing MS, it’s one piece,” says Dr. Alice as time goes on. Without a physical examination Schabas, neurologist at the UBC Hospital MS at least once a year, how are we going to identify Clinic. “Living with MS means patients are subtle changes that could indicate a patient going dealing with so much more than flares and from relapsing MS to secondary progressive MS? relapses. Fatigue, cognitive concerns, and I think we’ll see a hybrid model moving forward, mental health issues are all common aspects and it’s not a bad thing.”

The advantage of a hybrid model with more of living with the disease.” room for technology is also apparent on the An empowered patient is a healthy patient professional side, with new tools and ways of It’s a challenging time to be managing a condition interacting proving instrumental in ensuring like MS, but one positive outcome of the COVID-19 that research and professional development pandemic may be the rise of an even more edu- continue uninterrupted. “I think that one thing that’s been quite positive about the cated and empowered MS patient population.

Elisabeth Léger, who was diagnosed with MS COVID-19 pandemic, is that there have been in 2017, was fairly new to managing MS in any a lot more online educational opportunities

for clinicians,” says Dr. Schabas. “With so many new issues popping up during the pandemic, it’s been offering us a lot of opportunity for insight into some of the new data emerging.”

Dr. Alice Schabas

Neurologist, UBC Hospital MS Clinic

In times of uncertainty, continuity is everything The global pandemic has reshaped considerations in managing MS, including the continuity and effectiveness of treatment, immunologic effects, and services and technology all aimed at helping manage patients holistically for the long term.

There are so many unknowns with MS, even before you add a global pandemic into the mix. Dr. Schabas emphasizes that doctors still don’t have all the answers to the questions that patients may want to ask, but they’re working on them, and they have a solid grounding for offering advice. Looking back at this past year, the one thing that stands out is the incredible success in making the hard overnight transition to a new model and maintaining that critical continuity of care for patients like Léger throughout.

“I really think that managing my MS through this has helped me improve the way I live,” says Léger. “I now have a totally different way of eating and managing my stress. I’m meditating and doing all these things I didn’t do before. I feel like I can do a lot now to help control my disease. What I do miss is being with the MS community in person. Like everyone else, what I’m most looking forward to after the pandemic is reconnecting with others.”

This article was made possible with support from Biogen Canada.

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Cost-Effective Options Are Making Treatment More Accessible for Canadians with MS Affordable MS medications are contributing to the sustainability of the health care system while providing effective therapy.

Abigail Cukier

N I C K Y N AS H S H OT BY N EI L Z EL L ER

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icky Nash, a new mom from Calgary, was experiencing periods of numbness in her arm, leg, and face. She especially noticed it during times of stress. Over a period of about 18 months, Nash saw her family doctor, went for blood tests and a CT scan, and visited the emergency room several times, but doctors couldn’t find anything wrong. After her family doctor sent her for an MRI, she got a call the next day with a referral to the multiple sclerosis (MS) clinic. In August 2019, Nash was diagnosed with relapsing-remitting multiple sclerosis (RRMS).

A chronic autoimmune disease of the central nervous system, MS can affect vision, memory, balance, and mobility. RRMS is characterized by relapses in which new or recurrent neurological symptoms flare up for days to months and are followed by periods of recovery, during which many functions return. About 85 percent of people with MS are diagnosed with this form of the disease.

Ongoing progress in developing new treatments There’s no cure for MS, but there has been much progress in developing medications to treat it. For example, disease-modifying therapies target some aspects of the inflammatory process of MS and can reduce the frequency and severity of relapses, reduce the number of new lesions in the brain and spinal cord as seen on MRIs, and slow down disability. “Exciting research is ongoing to develop new and better treatments,” says Dr. Paul Marchetti, a neurologist at the St. Michael’s Hospital Multiple Sclerosis Clinic. “The growing number of treatments helps tailor selection to the patient’s specific needs and priorities.”

This personalized approach is one of the most important aspects of treatment, says Nash, who’s currently taking a subsequent entry non-biologic complex medication.

“Everyone’s journey with MS is different and the treatment plan should take that into account,” she says.

Doctors are encouraging MS patients to take a more active role in their treatment plan and to regularly communicate with their doctor to form the best strategy. An individualized plan is important because symptoms may come and go, gradually worsen, and sometimes disappear. Treatments differ in how they’re taken and how often, and in what side effects they may cause. There are also differences in how different people respond to a treatment and one person’s response to a medication could change over time, in which case a switch in treatment plan should be considered.

The cost of treatment is a consideration for patients Another consideration for patients is the cost of MS treatment. Although most medications are covered by insurance, they’re rarely covered fully.

Subsequent entry non-biologic complex medications are changing the landscape, however. These less expensive medications significantly reduce the cost for patients.

This article was made possible with support from Pendopharm.

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“Recently, many patients have been asked to transition to subsequent entry medications from the original treatment. The reduced cost of these treatments is significant to health care budgets,” says Dr. Virginia Devonshire, a neurologist and Clinical Associate Professor at the Department of Medicine at the University of British Columbia, referring to a policy under the provincial drug plans in British Columbia, Alberta, Ontario, and Quebec.

The subsequent entry complex medications for MS aren’t precisely considered generics — or an exact copy of the original treatment. Though there’s a Health Canada standard to accommodate and to ensure treatment efficacy, Dr. Devonshire says that some people living with MS have had some anxiety around switching. “Most have done very well with their current therapy and are concerned that they might have side effects or a change in efficacy,” she says. But Dr. Devonshire says that she hasn’t yet seen any noticeable change in her patients’ disease activity after a switch. “If we can get the same treatment outcome at a lesser cost, this benefits us all. It saves taxpayers’ money that could go to areas of health care that are underfunded.”

Dr. Mark S. Freedman, a Professor of Neurology at the University of Ottawa and Director of the Multiple Sclerosis Research Unit at The Ottawa Hospital, says that he hasn’t observed any differences in his patients’ conditions after they’ve switched. He points to a study that found the subsequent entry complex medication had equivalent efficacy, safety, and tolerability in treating RRMS. “I think we’re assured that it’s just as effective,” he says.

Follow a treatment plan that’s right for you Having more affordable treatments available in Canada means they’re more accessible, providing increased options to help patients live fulfilling lives. Nash is grateful to have a more cost-effective treatment, which helps improve her quality of life without having to worry about finances.

Since being diagnosed, Nash has learned as much as she can about MS and maintains open communication with her doctor to follow a treatment plan that feels right for her and her family. She advises other MS patients to take it day by day.

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When Amanda Carter was 24 years old, she was diagnosed with relapsing-remitting multiple sclerosis (RRMS). Now 29 years old, Carter shares her insights on living with the disease and how a personalized treatment plan has impacted her quality of life.

Tell us a bit about yourself.

I’m 29 years young and I work as an operations administrator for a distribution company in Edmonton.

I was diagnosed with RRMS when I was 24, through an episode of optic neuritis, where I went blind in my left eye for about three months. I started going for MRIs every six months for two years. When they found active lesions in my brain, I was given my first MS medication.

It’s been quite the roller coaster ride. I’ve had to switch to a few different medications until I found a treatment plan that fit my lifestyle. No day is ever the same — some can be OK, some can be horrible, and others can be great.

After being diagnosed, I started to realize all the little things that I thought were just weird coincidences that had been happening or worsening in the past few years, and all of it made sense — the chronic fatigue, muscle stiffness, shaky hands, memory loss, strain with word finding, temperature regulation, and insomnia which I’ve struggled with off and on since I was 15.

How important is a personalized treatment plan to your quality of life?

Having a personalized treatment plan is extremely important to my quality of life. MS can affect every system in the body. Everyone has different reactions to different treatments, but with a personalized treatment plan that fits the individual, the quality of life can be like that of anyone else. While I’ve found a treatment that works well for me, my symptoms are still there and it’s not always easy, but it’s just one less thing to worry about.

What advice would you give to fellow Canadians living with MS who are scared about starting or switching to a new treatment?

Having MS is scary to begin with, never mind needing treatment. There are many different treatments available nowadays, depending on stage of MS, age, and various symptoms. It’s hard to know which will be the right one for you. If you’re scared about starting or switching treatment, I definitely understand.

The key thing to always remember is that your doctors are there to help you and in order to do that to the best of their ability, they need the whole picture. It took me a while to get comfortable sharing all the things that were going on with my body with doctors I barely knew or saw. When I was told that I should go on medication, I was beyond scared. The best way to look at it is to just try it and see if it helps or if things get worse. Either way, your doctor is there to support you through your journey.

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There’s No Cure for MS, But There Is a Way Forward Living with and managing multiple sclerosis (MS) today is a whole different landscape than it was just 30 years ago.

D.F. McCourt

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oday, Canadians with relaps- Assistant Professor of Neurology, University of ing-remitting multiple sclerosis Ottawa, MS Specialist, The Ottawa Hospital. “It (RRMS) can realistically hope to is important to understand that each incidence live a life where their disease is of relapse presents the chance to cause damage.” well-managed and their quality of life is kept For people living with MS, the ability to high. Doing so, however, requires a thorough manage their disease is central to their quality understanding of their of life, their sense of stability, own individual disease, and their plans for the future. its symptoms, and the “I’ve been practising for 35 years,” says Dr. François network of support available to help them manage Grand’Maison, Neurologist, their journey.

Charles LeMoyne Hospital, Université de Sherbrooke Around 90,000 CanThere are a number of and Director, Neuro Riveadians live with multiple things within a patient’s Sud MS Clinic. “I saw the sclerosis (MS), one of the highest rates in the era before treatment and control that they can do world, and the majority of to optimize their health [...] after treatment, and it’s completely different. In them are diagnosed with Nutrition and exercise are the 90’s there were very RRMS. MS is a chronic recommended strategies few MS clinics and what autoimmune disease of to support health and may neurologists could do was unknown cause in which help improve quality of life. quite limited. Of course, the body’s immune system attacks the myelin sheaths there was treatment of symptoms, what we call protecting its own nerve symptomatic managefibres. These attacks cause inflammation and can damage the myelin, which ment. However, today, people living with MS leads to changes in the way signals travel down can feel empowered to choose from the many the nerve. When this happens, a patient can therapeutic options available to them that will experience a variety of symptoms. In RRMS, this help meet their treatment goals.” period of time where a person exhibits a relatively “More and more I see patients coming in sudden onset of symptoms is referred to as a to ask me if I’m sure they have MS,” adds Dr. relapse or flare-up and can last weeks or months. Grand’Maison. “They’ll say they’ve been almost The symptoms can include vision problems, 10 years without a relapse and that their MRI is lack of coordination, and cognitive impairment. completely stable. I hear this quite a bit.”

Afterwards, if the damage is substantial and if scars replace the myelin, the nerve signals may The keys to success: a healthy lifestyle, be completely disrupted and the nerve fibres may a watchful eye, and a strong support be damaged. network Still, even with all the advancements in care, Each relapse runs a successfully managing RRMS hinges on the patients themselves communicating openly risk of permanent damage “Many patients are left with residual symptoms with their health care team about their after their relapses and disability accumu- evolving symptoms, their lifestyle, and their lates over time,” says Dr. Heather J. MacLean, personal treatment goals. The network of sup-

port for Canadians with MS is broad, but it’s important that the person living with MS be an active participant in their own care.

“There are a number of things within a patient’s control that they can do to optimize their health,” says Dr. MacLean. “Nutrition and exercise are recommended strategies to support health and may help improve quality of life.”

MS is a complex disease and there are a lot of moving parts to its management, so Canadians are fortunate to have access to a world-class support network through organizations like the MS Society of Canada. “The MS Society of Canada can share so much information on everything from diagnosis to treatment,” says Dr. Grand’Maison. “It’s a great resource for support groups as well as information on ongoing research.”

Dr. François Grand’Maison Neurologist , Charles LeMoyne Hospital, Université de Sherbrooke and Director, Neuro Rive-Sud MS Clinic

Dr. Heather J. MacLean Assistant Professor of Neurology, University of Ottawa, MS Specialist, The Ottawa Hospital

Learn more about RRMS and the network of support available at mssociety.ca. Visit myrules.ca for a questionnaire that will help track your symptoms and guide discussions with your doctor.

This article was made possible with support from a research-based pharmaceutical company.

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Canadians with MS Are Encouraged to Get a COVID-19 Vaccine While we still face challenges in the fight against COVID-19, Canada’s vaccine roll-out is an important step to help prevent the disease.

Abigail Cukier

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f you have multiple sclerosis (MS), you may be wondering if you should get a COVID-19 vaccine. While data on the vaccines’ safety and effectiveness specifically for people with MS isn’t yet available, international expert researchers and medical professionals recommend that people with MS get the vaccine. Current evidence suggests that the available vaccines aren’t likely to trigger an MS relapse or have any impact on long-term disease progression. Health care providers are constantly monitoring to see if any new information comes to light.i The guidance is based on data collected from the general population and prior experience in vaccinating people with MS, says Caroline Lemieux, Regional Medical Director of Neurology and Immunology, North America at EMD Serono.

Get a vaccine as soon as it’s available COVID-19 vaccines can be given to people with MS, says Dr. Sarah A. Morrow, Director of the London MS Clinic in London, ON. “We administer non-live vaccines to people with MS regularly, such as the influenza vaccine or the shingles vaccine, without any issues,” she says, adding that the risk of COVID-19 outweighs any potential risks from the COVID-19 vaccine.

People living with MS aren’t at higher risk of contracting COVID-19 or at higher risk of a

serious or severe outcome if they’re exposed to the virus, says Dr. Morrow. However, some medications used in MS affect the immune system.i “This can increase the risk of developing complications from COVID-19,”i says Dr. Morrow.

While people with MS are no more likely than the general population to develop COVID19 or to become severely ill or die from the virus, some groups are more susceptible to a severe case. This includes people with progressive MS, those with MS who are over the age of 60, men with MS, Black and South Asian people with MS, those with higher levels of disability, and people with MS who have certain medical conditions (obesity, diabetes, or heart or lung disease).i

can get back to more of these activities.

“It’s very exciting to see vaccines roll out to people with MS across Canada,” says Lemieux.

“All of us have a personal responsibility to do a number of things that help slow the spread of the virus as quickly as possible.”

Speak to your health care provider to learn more about MS and COVID-19 vaccination.

MS International Federation - Global COVID-19 advice for people with MS. Accessed April 2021 from: msif.org/news/2020/02/10/thecoronavirus-and-ms-what-you-need-to-know/ CA-NONNI-00007

Stay up to date with your usual MS care Dr. Morrow suggests checking out the MS Society of Canada’s website for reliable information regarding MS and COVID-19, including vaccination advice.

“Each health unit is rolling out the vaccine differently, so checking your local health unit website regularly would also be useful. Talking to your neurologist is also very important,” she says, adding that it’s vital to continue your usual MS care.

Lemieux adds that people with MS should also continue rehabilitation activities and stay active as much as possible, whether through remote sessions or in clinics, where available.

She looks forward to a time when Canadians

Caroline Lemieux

Regional Medical Director, Neurology & Immunology North America, EMD Serono

This article was made possible with support from a research-based pharmaceutical company.

Dr. Sarah A. Morrow

Director, London MS Clinic