Dr. Pamela Valentine is president and CEO of the MS Society of Canada. Dr. Anthony Feinstein is a leading MS researcher at the University of Toronto and Sunnybrook Health Sciences Centre.
The COVID-19 pandemic has been tough. Canadians have suffered through mental-health strain, loss of employment income and uncertainty. Others have been ill, hospitalized and not all have come back from hospital. But the pandemic has been exceptionally hard on people living with chronic and episodic illnesses such as multiple sclerosis (MS), a debilitating disease that can take away so much – mobility, independence, income and a pain-free life.
With more than 90,000 Canadians living with MS, Canada has one of the highest rates of the disease in the world. Every day, people with MS wake up to adversity and do everything in their power to persevere: the woman who struggles to button her shirt in the morning, yet is determined to stand up and dance at her granddaughter’s wedding; the high-school athlete with tingling and numbness in his legs trying to rally his team to victory; the lawyer with blurred vision and foggy thoughts; the father struggling to say his child’s name; the cyclist feeling her balance go.
And, just as COVID-19 has had a more pronounced impact on women, MS also affects women at a much higher rate – 75 per cent of Canadians living with MS are women.
Health charities such as the MS Society of Canada play a critical role in our health system. We serve as information hubs to help Canadians navigate a complex health network. We offer front-line service to patients and provide online rehabilitation services. We connect people living with MS for peer support. We help patients apply for disability and other support services. We play an integral role in the social fabric of Canada.
We are increasingly filling the gaps in the health system – and in a pandemic, these gaps can become chasms. Demand for our services is up just as charitable giving – the backbone of our funding model – has dried up. Our funding model is reliant on grassroots, event-related fundraising, yet we can no longer hold in-person events, and online alternatives do not come close to filling the void. Yet, across the health charities sector, we have seen a fourfold increase of Canadians seeking support services owing to cancelled surgeries, appointments and specialty care. The MS Society of Canada alone is facing a negative impact of at least $21-million, or half our annual budget – while confronting greater demands.
Perhaps more important than our social and institutional function is our role in fuelling medical research. Virtually no other disease has seen the kind of life-altering advancement that MS has seen in the past two decades. We’ve revolutionized technology to diagnose – and therefore treat – much more quickly. Intervening early with the right treatment is critical to the prognosis and level of disability that will result from the disease. We have shortened those times dramatically – and thousands of Canadians benefit directly.
We’ve seen phenomenal progress in disease-modifying therapies: Two decades ago, there were three therapies available. Today, there are more than 14, with options to combine and tailor treatment to each patient’s individual circumstances. This in turn can help keep patients well throughout their life. We fund basic research – core molecular and cellular research. And on a wider basis, we fund translational research to find treatments for patients.
We are progressing by leaps and bounds, but there is far more to be done. We need more research on why one person’s MS progresses and another’s doesn’t. We are also on the cusp of treatments that target cellular and nervous system repair by actually reversing the effects of MS. This is the game-changing research and innovation we have been funding – but it’s all slowing to a trickle.
Canadian health charities fund $155-million annually in research, supporting 1,600 researchers and 2,500 trainees across Canada. Yet, in the first six months of this year alone, we saw $40-million less going toward this work than in the previous year. We risk our important research momentum being lost.
We need government to step in. Along with other charities, we are calling on the federal government to establish a $131-million funding program over two years to support Canada’s most vulnerable citizens. This funding will allow us to maintain our vital services, while also keeping up with the increasing demand because of COVID-19. It is far from a panacea, but it can help us from going under until the crisis stabilizes.
And, this year in particular, health charities will need Canadians’ generosity – perhaps more than ever before. We need Canadians to open their wallets and support the important work we’re doing in the community and in the research lab. This research cannot be interrupted. We still have work to do. We need your help to do it.
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