Advocacy brings hope and change
Multiple sclerosis (MS) is an unpredictable disease that can have a profound impact on a person’s ability to earn a living. With many patients first diagnosed in their twenties or thirties, the disease can bring decades of challenges that not only affect quality of life but mental health, family dynamics and relationships.
The MS Society of Canada says income and employment security, affordable treatment solutions and accelerated research, as well as enhanced accessibility, are absolute necessities. That is why the organization is pushing governments to take a stand on a disease that is complex, debilitating and life-changing for the lives it touches.
“Advocacy brings hope and change, but we are on a long road,” says Benjamin Davis, national vice-president, government relations, with the MS Society. “We have to be patient, focused and bring objective information to elected officials so they can make good decisions. If the government responds to our calls, great things can happen.”
Approximately 85 per cent of Canadians with MS are diagnosed with relapsingremitting MS (RRMS), a form of the disease characterized by unpredictable but clearly defined relapses during which new symptoms appear or existing ones get worse. In between relapses, recovery is complete or nearly complete to pre-relapse function (remission). It affects women up to three times more than men. The episodic nature of the disease brings periods that may vary in length and severity where an individual may be unable to work or perform everyday activities. This can make it difficult for some Canadians living with MS to function effectively in the workplace.
“In the Canadians with Disabilities Act there is no place for intermediate, or episodic, disability. Under the current definition, people are either fully disabled and therefore gain income support, or they are not,” says Julie Kelndorfer, director of government and community relations with the MS Society. “There is a similar challenge with the Disability Tax Credit. A person needs a severe and prolonged disability to obtain the extra support needed when they are unable to function fully. Under those stipulations, people with RRMS do not currently qualify. This has brought income and employment disparity to Canadians with episodic illnesses.”
A co-ordinated effort on the part of advocates, industry and patient groups is helping to move the needle in a more positive direction.
In June of this year, persistence paid off when the term episodic was included in the definition of disability in Bill C-81 (Accessible Canada Act). “This will help open the door for people living with MS to receive additional income and sickness benefits,” says Kelndorfer. The move will not only benefit MS patients, however. “It will also help Canadians diagnosed with any of 27 other episodic illnesses that include diabetes, migraines, some forms of cancer and mental health conditions.”
Moreover, Private Member’s Motion M-192, which passed in the House of Commons in early November, focuses specifically on episodic illness and its prevalence and affect across Canadian society. The MS Society believes M-192 complements, supports
and strengthens proposed legislation in Bill C-81.
“Accessibility is about more than removing physical barriers. It is about access to treatment, comprehensive home care and appropriate long-term care,” Kelndorfer says. “M-192 has opened a discussion that will include not only legislators and advocates, but those who are living with these conditions every day. Bringing forward firsthand real-life experiences is critical for our work and the direction in which we need to go. This is monumental for the community.”
Advocates, industry and patients must continue to urge for progress on efforts like M-192 by writing letters, participating in the MS Society online campaign, and engaging with members of parliament from all parties, she adds. “These situations present an important opportunity to highlight the realities of episodic disability, its impact on the lives of Canadians, and their ability to enjoy an enhanced quality of life.”
Government must also continue to work toward equal access for people with episodic illnesses, says Davis. “A refundable Disability Tax Credit and flexible sickness benefits, investment in fundamental research, and improved accessibility for people with MS can all make a big difference.”