BRIEF TO THE STANDING COMMITTEE ON FINANCE
PRE-BUDGET CONSULTATION
SUBMITTED AUGUST 14, 2009
EXECUTIVE SUMMARY AND RECOMMENDATIONS
The Multiple Sclerosis Society of Canada is pleased to provide input to the Standing Committee on Finance. Our perspective is that of people affected by MS, including the estimated 55,000 to 75,000 people who have the disease; their families and caregivers; health care professionals; researchers and MS Society of Canada supporters. In this brief we will focus on two overall objectives: Bringing an end to this devastating disease in the future and meeting the needs of people affected by MS today.
Multiple sclerosis – or MS – is an often progressive and disabling disease of the brain and spinal cord. Canada has one of the highest rates of MS in the world. MS is a costly disease. In addition to the indirect costs associated with the loss of productivity and the day-to-day activities of life, MS has an economic impact on the health care system because of increased visits to a doctor, longer stays in hospital and the need for often costly medications.
Specifically, the MS Society is asking the federal government to invest in programs that will more directly meet the needs of people affected by MS today and advance health research to help us find a cure for tomorrow. We have two major recommendations to offer and provide details about how these recommendations can be achieved in the text of this brief.
Recommendation: That the Government commit Canada to be a world leader in discovery health research by providing significant, new funding. MS Society urges the Government to commit an additional $350 million to discovery health research, with at least 70% directed to CIHR, beginning in 2010 and increasing in following years, so that by 2012, federal government funding of health research increases from the current 21% to reach 25% of gross domestic expenditures on research and development, and by 2020, increases to 30%.
Recommendation: That the federal government make several immediate changes to the Income Tax Act and Employment Insurance as part of the development of an income security strategy for people affected by MS and other episodic disabilities, chronic diseases and disabilities.
ABOUT MULTIPLE SCLEROSIS
Multiple sclerosis – or MS – is an often progressive and disabling disease of the brain and spinal cord. The disease attacks the protective myelin covering of the central nervous system, causing inflammation and often destroying the myelin in patches. In its most common form, MS has well defined attacks followed by complete or partial recovery. MS symptoms are unpredictable and vary greatly from person to person. Symptoms may include: vision disturbances such as double or blurred vision; extreme fatigue; loss of balance; problems with coordination; stiffness of muscles; speech problems; bladder and bowel problems; short-term memory problems, and even partial or complete paralysis.
Canada has one of the highest rates of MS in the world with an estimated 55,000 to 75,000 people affected by the disease across the country. It is most often diagnosed between the ages of 15 and 40, during the prime career and family building years.
THE IMPACT OF MULTIPLE SCLEROSIS
Multiple sclerosis is a costly disease. MS has a significant economic impact on the health care system because of increased visits to a doctor, longer stays in hospital and the need for often costly medications. One study, done in the late 1990s, estimated the lifetime cost of the disease is $1.6 million per each person with MS.1 In other research, the Public Health Agency of Canada estimated the total costs associated with MS in 2000-2001 were almost $1 billion: $139.2 million in direct costs (hospital care, physician care, drugs) and $811.3 million in indirect costs (dollar value of production costs due to long-term disability or premature death).2 The MS Society believes the actual total costs of MS are much higher since many other indirect costs such as the need to leave the work force prematurely were not captured.
For example, MS has a profound impact on the ability to earn a living. As noted above, many people are diagnosed between the ages of 15 and 40, just when they are finishing school, starting careers and beginning families. As the disease progresses, it takes a toll on a person’s ability to stay in the work force. Over time, up to 80% of people with MS can no longer work. Sometimes, this is because the disability caused by MS becomes more severe, but at other times, it’s because of a lack of understanding and accommodation by employers and insufficient government supports.
WHAT IS NEEDED
Specifically, the MS Society is asking the federal government to invest in programs that will more directly meet the needs of people affected by MS today and advance health research to help us find a cure tomorrow.
Research to end MS
While there are some treatments for MS, they have limited impact on stopping the worsening of the disease. As yet, there is no cure, but Canada is a world leader in MS research to help find the cause and the cure and to help improve the lives of those who have the disease.
The MS Society of Canada is committed to ending MS. We fund a $10 million research program annually which supports the very best research projects and researchers from coast-to-coast and fellowships and scholarships for young scientists to attract them to the challenging and exciting world of MS research. Canadian MS researchers are recognized internationally for advancing knowledge about MS in children, the use of bone marrow transplantation as a potential therapy, exploring vitamin D as a possible disease prevention strategy and pioneering magnetic resonance imaging as a tool to track the disease.
Last year, the MS Society launched the endMS Campaign, a new program designed to increase the pace of MS research. It will raise $60 million over five years to recruit, train, support, and retain the next generation of MS researchers in Canada and to accelerate their research activities to find a cure and improved treatments for MS. The flagship of this investment is the new endMS Research and Training Network.
All of these efforts build on the solid foundation provided by the Canadian Institutes of Health Research (CIHR), Genome Canada, the Canadian Foundation for Innovation and the Stem Cell Network. Within CIHR, the MS Society works with a number of institutes to extend our reach: the Institute of Neurosciences, Mental Health and Addiction, the Institute of Infection and Immunity and the Institute of Genetics. The MS Society’s research program and those of other health charities partner with and rely on federally-funded agencies to support the basic discovery research that scientists from all disciplines build on to sustain our health system, improve care and enhance the prevention of disease.
Mobilizing Science and Technology to Canada’s Advantage, the science and technology strategy announced in 2007, acknowledges world-class research excellence is Canada's standard, and that talented, skilled, creative people are the most critical element of a successful national economy over the long term. The science and technology strategy recognizes that health – and related life sciences and technologies – is one of Canada’s research strengths and pledges to build a critical mass of expertise in this priority area.
The MS Society agrees the strategy is a roadmap to a healthy future for Canadians, and it is vital that federal government funding on health research take a lead role. In 2007, Canada’s gross domestic expenditures on research and development in the health field were $6.3 billion, according to Statistics Canada.3 The federal government’s share of these expenditures was 21% or $1.3 billion4 with CIHR research expenditures, during this time period, totalling just under $823 million.5 The MS Society submits this level of expenditure on health research by the federal government is too low to reach the goals set by the strategy.
The Multiple Sclerosis Society of Canada urges the Government of Canada to increase its leadership role in health research – particularly in discovery research – and to utilize the Canadian Institutes of Health Research, Canada’s premier health research funding body, as a key component to reach this goal. Discovery health research is the kind of research that leads to the creation of fundamental knowledge that makes possible commercialization and improvements to the health of Canadians.
Recommendation: That the Government commit Canada to be a world leader in discovery health research by providing significant, new funding. MS Society urges the Government to commit an additional $350 million to discovery health research, with at least 70% directed to CIHR, beginning in 2010 and increasing in following years, so that by 2012, federal government funding of health research increases from the current 21% to reach 25% of gross domestic expenditures on research and development, and by 2020, increases to 30%.
Strategy for income security
Income security for people affected by MS is of utmost importance, especially considering the costs of the disease over a lifetime are borne by individuals and their families. Our overall recommendation is for the Government of Canada to develop an income security strategy for people affected by MS and other episodic disabilities, chronic diseases and disabilities. We suggest strongly that development of the strategy should involve provincial governments, persons with disabilities, organizations representing persons with disabilities and researchers, and that it should build on the excellent work that has been accomplished or is underway.
For example, we are pleased to acknowledge the new Registered Disability Savings Plan. We applaud its development, and while we will be providing some suggestions for improvements to the Department of Human Resources and Skills Development Canada (HRSDC), we are letting our members know about the RDSP, and how they might use it.
In addition, the Office of Disability Issues (ODI), within HRSDC, has recognized there is a policy gap between the existing federal policy and program framework in relationship to people with episodic disabilities who have at times a compromised ability to participate in the workforce.6 The gap is most pronounced in the areas of income tax relief and employment insurance. ODI has commissioned research with results expected later this year that should assist policy and program development going forward.
A number of provinces are moving to recognize and assist caregivers, who are vital to the health and well being of people with MS. The province of Manitoba has just launched a refundable caregiver tax credit that spouses and others can claim. The province of Ontario recently implemented a long-range scenario planning process focused on caregiver supports, including employment and taxation supports.
It is time, therefore, to capitalize on these efforts and to discuss what could be done in a practical and immediate way to maximize income security for people affected by MS and other episodic disabilities, chronic diseases and disabilities. Some small but important steps should be taken today to help build better futures for these Canadians.
Recommendation: That the federal government make several immediate changes to the Income Tax Act and Employment Insurance as part of the development of an income security strategy for people affected by MS and other episodic disabilities, chronic diseases and disabilities. Immediate changes should include:
Allowing spouses to claim the Caregiver Tax Credit – right now this isn’t allowed.
Making Employment Insurance sickness benefits more flexible to allow people with MS and other episodic diseases to work part-time and receive partial benefits.
Making the Disability Tax Credit a refundable benefit.
Additional Information
Allow Spouses to Claim the Tax Credit for Caregiving – Currently, a spouse, the person who provides most of the caregiving for a person with a disability or chronic disease, is not allowed to claim the Caregiver Amount (caregiver tax credit). Making spouses eligible for the Caregiver Amount would send a strong signal that the federal government recognizes the exceptional contribution that spouses make as caregivers. We don’t believe the cost of allowing spouses to claim the caregiver amount would be significant.
Make EI Sickness Benefits More Flexible – Allowing people who have an unpredictable and episodic disease – diseases such as MS, lupus, some forms of mental illness, cancer, arthritis and Hepatitis C and HIV – to have the option to work part time while receiving partial Employment Insurance sickness benefits, encourages them to stay in the work force. EI rules could be changed to allow individuals to work part time and receive partial sickness benefits for 150 half-days instead of the current 15 weeks or 75 full-days. While this change has the potential to increase the number of EI sickness benefit payouts, this cost will be substantially offset by the increased number of people who will be able to remain at work, earning salaries and paying taxes.
Make the Disability Tax Credit Refundable – The MS Society recommends the Disability Tax Credit should be made refundable for people who cannot use the credit because their income is too low or in the case where they cannot transfer the credit. This would provide some modest income for a group of people who unfortunately have some of the lowest incomes in Canada. We understand this has been costed internally,
In closing, the Multiple Sclerosis Society appreciates being able to provide recommendations that will help meet the needs of people affected by MS today and speed the end of this devastating disease through health research.
For more information, contact:
Deanna Groetzinger, Vice-President
Government Relations and Policy
Multiple Sclerosis Society of Canada
The Canadian Burden of Illness Study Group, “Burden of Illness of Multiple Sclerosis: Part I: Cost of Illness,” The Canadian Journal of Neurological Sciences, 1998, 25: 23-30.
“Multiple Sclerosis,” Canadian Institute for Health Information, The Burden of Neurological Diseases, Disorders and Injuries in Canada, 2007: 72-81.
People with episodic disabilities like MS can often only participate in the workforce intermittently due to the unpredictable nature of the disease. Periods of relative overall good health are followed, unpredictably, by periods of poor health that render it challenging or impossible to work for a period of time.
