Multiple sclerosis is a disease with many faces. You may have a family member with MS, or know a colleague living with the disease. It may be affecting someone in your class or in your neighbourhood. An estimated 100,000 Canadians live with multiple sclerosis, and those numbers are expected to rise in the years ahead. In fact, Canada has the highest rate of MS in the world.
In the past 25 years, there has been significant progress in the care and treatment of people living with this unpredictable neurological disorder. It used to be that doctors had very little to offer patients diagnosed with MS. The past decades have seen a rapid growth in the number of approved treatments — especially for those living with relapsing-remitting MS (RRMS). There are far more options available to help modify the course of the disease, and provide relief from its symptoms.
As the number of approved MS therapies increases in Canada, so, too, have the number of decisions that need to be made: Should I move forward with a medication plan right away, or wait? How do I assess the risks of disease-modifying therapies? What kind of drug delivery system should I choose? Will the side effects of my MS treatment keep me from going to work, or playing with my kids?
Finding out you have MS can be a daunting experience, says Jennifer McDonell, information curator for the MS Knowledge Network at the Multiple Sclerosis Society of Canada. The Knowledge Network has a team of “MS navigators” available to provide up-to-date information on MS and discuss new research and treatment options. The MS Society of Canada’s website is also a valuable resource to help those diagnosed with MS and their families learn more about the effectiveness of therapies and their side effects.
“Being diagnosed, and then being handed a list of all these drugs and trying to sift through them, and trying to understand the disease, can be overwhelming,” McDonell says. She recommends Canadians just learning they have MS bring a friend or family member with them for initial discussions with their healthcare team. That extra person in the room can provide emotional support, jot down notes and ask questions. She stresses that it is vital for people living with MS to be part of the decision-making process when it comes to their treatment plan.
“I think some people look to their neurologist to make the decisions for them, while others are very active in the process,” says McDonell. “Sometimes, it will depend on the type or course of MS you are diagnosed with.”
McDonell adds that doctors may also have a different perspective on the most appropriate treatment options than someone receiving a diagnosis.
A physician, having seen the impact of MS in his/her practice, may suggest a drug therapy to preserve as much nerve function as possible in the long term. Someone just diagnosed, however, may be more focused on the here and now and the impact of possible side effects on their day-to-day activities.
An individual’s comfort level with risk is another significant consideration when choosing a treatment therapy. Angelica Asis, acting director of research for the MS Society of Canada, points out that some MS treatments are more established, while other, newer drugs will not have the same long-term track record. Some MS therapies are highly effective and have been shown to keep the disease at bay, but may carry rare but potentially serious risks.
Some Canadians living with MS may opt for a treatment course that carries more risk, because they fear above all losing their mobility and independence. For people who want to tackle their disease with a more forceful approach, there are new ways to mitigate the risks.
“I think doctors are really trying to work together to share some best practices around how to make decisions,” Asis says. “People with MS in general, from my experience, really want to take control of their disease. They are very active in researching the treatment, being vocal with their doctors and doing complimentary approaches like exercise.”
With many new treatments in the pipeline, it will become increasingly important for Canadians living with MS to take an active role in choosing medications that best suit their needs — whether that be an injectable, pill or infrequent infusion therapy. Treatment decisions are best made on a case-by-case basis. It is important to take into account a number of factors, including a person’s health, lifestyle, cost and personal goals.
“Treatments are becoming more effective, and more is known about managing potential adverse effects. With each new finding comes more understanding of the disease process, and treatments are more targeted and efficacious,” McDonell says. “Every day offers more hope, and more promise.”
With that promise is the reality that MS is a challenging condition to live with, and often difficult to treat. MS places a burden on individuals, their families and the health-care system. Much more needs to be done — especially for those living with more severe progressive MS. However, the successes of the past 25 years have shown that investing in research produces results. There is reason to believe treatment therapies will continue to evolve, to better help Canadians with MS live healthier lives.
This story was created by Content Works, Postmedia’s commercial content studio.