Moving Policy to Action

MS Society works for changeThe Multiple Sclerosis Society of Canada has worked for policy change for more than 30 years. Now, it has a series of new policy papers to convince governments that the transformations it calls for are practical, economical and above all, just.

The recently released position papers focus on four issues:

- income security and supports
- caregiver supports
- access to drug therapies
- access to home care and age-appropriate long-term care

Why these issues? Susan Murray, chair of the MS Society National Government Relations Committee, explains: “As a group, we realized that while there are many issues we could tackle, the way to really have influence is to zero in on those issues that have the most impact on people with MS, their families and caregivers. Equally important, we agreed we should focus on problems we believe can be solved.”


Income security and supports

The issue of income support is especially important to people living with intermittent, reoccurring disabilities like MS. An episodic disability keeps people from participating regularly in the workforce, but also from qualifying for federal disability benefits. Because the average age of MS diagnosis is 30, the illness has a profound impact on a person’s ability to work. As the disease progresses, nearly 80 percent of people with MS are unable to work full-time.

The MS Society has specific short- and long-term recommendations for policy and program improvements. The overall goal is a continuum of programs that work together for people who have MS and other episodic illnesses (like arthritis, HIV/AIDS, lupus and mental illnesses).


Caregiver supports

Caregivers play an important role in enabling people with MS to remain in their homes and communities, but many caregivers are penalized for their decision to stop work to care for a loved one. These caregivers may face reduced pensions at retirement because they are no longer making contributions to the Canada Pension Plan, in addition to the loss of income resulting from their decision to leave work.

The MS Society has identified specific short-term recommendations to address the financial needs of caregivers, as well as recommendations regarding the longer- term need for a national caregiver strategy.


Access to drug therapies

Drugs that treat MS are expensive – disease-modifying drugs vary in cost from $17,000 to $40,000 a year, and symptommanagement drugs can cost up to $10,000 a year. Currently, provincial and territorial drug programs provide uneven access, and compensation ranges from generous coverage in several provinces to restricted coverage in others.

The MS Society urges all governments to work together and move quickly to provide Canadians with uniform access to necessary prescription drugs and related therapies.


Access to home care and age-appropriate long-term care

MS is chronic and most often progressive. Fortunately, the vast majority of people with MS are able to remain at home throughout their lives. Most manage with minimal assistance and adaptations to meet their changing needs. Others whose disease is more severe may need home renovations and assistance through home care and other services. A much smaller group who are acutely disabled will need to move to a long-term care home.

The MS Society believes the solution for people with MS and others is equitable access to a continuum of appropriate, high-quality housing and care, including age-appropriate long-term care.

MS Society volunteers and staff are using the position papers to advocate for change as they meet with federal and provincial politicians and officials. The position papers are available at www.mssociety. ca under Advocacy/Social Action/ Position Papers.


Multiple Sclerosis

Multiple sclerosis is an often disabling disease of the brain and spinal cord. An estimated 55,000 to 75,000 Canadians have MS, making Canada one of the highest-risk countries for the disease. The MS Society of Canada funds research to prevent, treat and cure MS and support services for people affected by MS