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Canada has the highest rate of MS in the world. Not only do 100,000 Canadians live with MS, their families, friends and communities live

with MS too.

But what does it really mean to live with MS in Canada?

If you live in Canada with MS, you may face the reality

that you will no longer be able to work because of the

unpredictability of your disease, and the barriers that exist

in our support systems. Your quality of life may be lower

than that of your friends and other Canadians. Your family

may also be your caregivers. If you have MS, you likely

spend free time trying to navigate a complicated health

and social support system, to access the resources that are

available to you as a Canadian living with a chronic illness.

If you live with MS in Canada, you want to see governments

take action on MS and we, the MS Society of Canada,

want to help.

WHAT WE DIDOver the past 18 months, more than 6,000 Canadians affected by MS responded to the Listening to People Affected by MS initiative, hosted by the MS Society of Canada, allowing us to better understand the impact of multiple sclerosis on quality of life (QOL) needs, gaps and barriers. A broad range of people were consulted including those diagnosed with MS, people waiting for a diagnosis of MS, informal caregivers of a person with MS, family members and close friends of people with MS.

How was data collected?

One-to-one interviews with

stakeholders

Two distinct online surveys

Eight focus groups across

Canada

A review of Canadian

legislation and regulations

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WHAT WE HEARD

WHAT THE MS SOCIET Y IS DOING

Based on what we heard, we are taking action.

Reviewing our own processes and strategic directions as needed to best meet the needs of Canadians touched by MS.

Continuing to offer locally based programs and services.

Developing a nation-wide information and referral service that will be available online and by telephone.

Asking federal, provincial and territorial governments to take action!

What is important for a good QOL?

[ access to medical care

[ support for caregivers and family members

[ being able to maintain independence

[ access to financial support

[ access to information and support

What are the barriers to a good QOL for

Canadians with MS?

[ living with MS and its symptoms

[ lack of financial support

[ challenges of navigating the health care system to access tests, treatment and support

[ lack of governmental support (e.g. for equipment, medical supplies, services, etc.)

[ not knowing where to find information, referrals and support for MS-related needs

What are the gaps in our

system?

[ accessing new drug therapies and rehab services is difficult

[ home care does not support people with chronic illnesses or disabilities

[ there is a lack of age-appropriate long-term care facilities

[ caregivers do not have the supports they need

[ people with MS cannot easily access employment and income support programs

[ disability support programs do not provide enough financial support

What do Canadians with MS need to

improve their QOL?

[ access to employment and income support programs that provide sufficient financial support to live a good QOL

[ reliable and timely access to treatments, rehabilitation services and home care

[ support for informal caregivers to deal with the physical, mental and financial stresses of caregiving

[ help with navigating the compli- cated maze of information, treatment, financial support, and other programs and services

[ the cure for MS

Women are more than

3       times as likely to develop

MS as men.

We learned that MS has a negative impact on

QOL.

People with MS and their

caregivers reported an overall lower QOL than their

friends and family.

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People with MS struggle to continue working, and we know from research as their MS progresses, nearly 80 per cent of Canadians impacted by the disease may find themselves unemployed.

Half of working age Canadians with disabilities have a disease which is episodic in nature. The Government of Canada must make commitments to ensure these Canadians also have access to employment.

Lack of secure, adequate income intensifies the hardship caused by MS and keeps people affected by the disease from participating fully in their communities.

Alex was diagnosed with primary-progressive MS in 2011. He was forced to leave his career because of his disease and now relies on income support to provide for himself, his wife

and three children. Alex and his family often went months without any income while trying to access disability benefits.

You have to jump through hoops to access employment insurance, social assistance and

disability supports. It takes many hours and lots of visits to doctors, health professionals and government

offices just to apply for the financial help you need. The process takes many months, and while you are

doing this you have to go without a diagnosis, income, medications and at times, even food on the table.

Alex

Many Canadians with MS cannot qualify for disability-related public or private insurance programs because eligibility is obtained through employment or is a workplace benefit, and many people impacted by MS in the prime of their lives are no longer able to maintain employment.

Now is the time to act. As Canada returns to a surplus, taking care of those with disabilities needs to be a higher priority than tax cuts.

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SUPPORT SECURE JOBS AND INCOME FOR PEOPLE AFFECTED BY MS

Call to actionThe federal government needs to take leadership with provinces and territories to improve job

retention and better coordinate income and disability benefits for people impacted by MS.

Recommendations

Secure JobsThe federal government should make immediate changes to make it easier for people with MS and others with episodic illnesses and disabilities to keep their jobs and stay in the workforce:

a Change the Employment Insurance program to make it more flexible and provide incentives to stay in the workforce.

b Expand federal-provincial labour market agreements and other employment funding programs to provide early intervention and other services to help support job retention.

Secure IncomesCanada’s governments should take action to improve income supports for people with MS who are unable to work or can only work on an intermittent basis. This support should match the level provided to lower income seniors through the Guaranteed Income Supplement. The federal government should:

a Increase existing federal benefits and credits for people with disabilities.

b Make disability tax credits fully refundable — like existing GST credits — to put badly needed income directly in the hands of low-income people with MS and other disabilities.  

c Change eligibility criteria to ensure people with episodic illness and disability have access to disability tax credits and benefit programs.

d Change federal legislation to prevent private insurance companies from cutting back Canada Pension Plan — Disability Children’s Benefit from people receiving long-term disability. This money is targeted for children of people with disabilities and it’s unfair to deduct it from the parent’s income.

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1 in 2 said their benefits

allow them to maintain a good

quality of life.

1 in 2 said it is difficult to get financial assistance for

MS-related issues.

1 in 3 had to rely on

financial support because of their MS.

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Multiple sclerosis affects the entire family. Spouses, mothers, fathers and children as well as friends become caregivers — integral to the health and well-being of people with MS.

Canada does not have a federal action plan to support care- givers, unlike other countries such as Great Britain, United States, and Australia that have national caregiving strategies or supports for caregivers.

The Family Caregiver Tax Credit is providing necessary recog- nition and support of caregivers. However, because the credit is non-refundable, it does not provide adequate support to low income families.

Doug

Doug has lived with MS for over 10 years. His disease recently developed into secondary-progressive MS, increasing the urgency

for his wish for the government to take action on creating a National Caregiver Action Plan. Teresa, Doug’s wife, still works, but often

needs time away to help provide the best care possible for Doug.

My wife Teresa is the rock of the family. She takes time off work to drive me to medical

appointments and to be there for my many rounds of treatment. She helps care for me, and I want the government to recognize the vital role she plays in our family. . . I want

better care for my caregiver.

Manitoba is the only province to put a legislative framework in place recognizing caregivers. They passed a Caregiver Recognition Act that includes a fully refundable Caregiver Tax Credit.

The MS Society will partner with other stakeholders as needed to meet the needs of caregivers and address their issues. In addition to existing information, referral and programming, we will develop a nation-wide information and support service for all people affected by MS, including caregivers. Our goal through creation of this service will be to provide standardized, reliable information, support and referrals to local community programs and services, including information and support specifically for caregivers.

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The federal government needs to make caregiver tax credits (family caregiver and caregiver tax credits) fully refundable to help provide essential income for people sacrificing time and income to care for people with MS and other disabilities.

The federal government needs to increase the caregiver tax credit amounts (family caregiver and caregiver tax credits) to help alleviate the immense financial burden faced by Canada’s caregivers.

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The provincial and territorial governments should support caregivers by offering a fully refundable caregiver tax credit, following the example of the Government of Manitoba.

CARE FOR THE CAREGIVER

The federal government should initiate the development of a National Caregiver Action Plan working with provinces, territories, caregivers, employers and organizations to: reduce financial burden, improve access to resources, create flexible workplace

environments, and recognize caregivers’ vital roles.

Recommendations

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The greatest worry for people

affected by MS is the impact the

disease has on family.

3 out of 4 of those who

require respite care do not have

access to it.

3 out of 4 caregivers do not have the support

they need.

Call to action

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Linda lives with progressive MS and understands how difficult a diagnosis of MS can be. Today, Linda

advocates for better coordinated, quality lifelong care and support for people who want to live, and live well,

with MS.

There is no one place to go for the many kinds of support you may need, and systems are

often not integrated enough for easy access to those supports. . . I would like all levels of government to recognize and connect all the pieces of the big picture that are needed to

live one’s life completely.

Linda

The majority of participants we engaged with in long-term care facilities told us they rarely participate in recreational or social programs because they aren’t suitable for people their age.

While most provinces provide excellent, time-limited care for people leaving hospitals, they fall short on providing services to those living with chronic illness or disability that require home care, which can make it very difficult for people living with MS to remain in their homes. Home care needs to focus on the family and include nursing care, meal preparation, home making, child care, and meaningful responsive respite care services.

The Way Forward: Alberta’s Multiple Sclerosis Partnership, builds on Alberta’s leadership in MS research and care, and will help the

province continue with its tradition of innovative medical research. The plan will further integrate services, provide for a more coordinated and comprehensive system of care, and promote greater partnerships with industry and among MS organizations, the health system and government.

The MS Society’s MS GPS System Navigation and Advocacy and Volunteer Legal Advocacy programs are examples of how we are helping Canadians with MS get the care and supports they need. To learn more about these programs visit: mssociety.ca

The MS Society plans to build on existing information and referral services to create a nation-wide MS information and support service, which will allow people affected by MS to connect by phone and online to a team of information and referral navigators.

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It’s time to help people get the care they need, when they need it, throughout their lives. Provincial and territorial governments play the leading role in delivering supports and services

and they must lead the development of MS strategies that better coordinate lifelong care and support for people affected by MS.

The federal government must do its part and harness the forthcoming report of the National Population Health Study of Neurological Conditions to deliver an action

plan for all Canadians living with diseases of the brain including MS.

Call to action

People with MS, those with other diseases of the brain, and people with disabilities need equitable access to a continuum of appropriate, high quality housing and care. This means governments need to:

a Invest in comprehensive home care for people with long term chronic health conditions such as MS.

b Create a range of age-appropriate housing and care options for people who cannot remain at home.

Governments need to fund rehabilitation services in the community (i.e. physio- therapy, occupational therapy, vocational rehabilitation) for people living with MS.

Governments need to ensure people with MS have timely access to affordable treatments.

a The provincial and territorial governments need to provide timely access and public reimbursement to all Health Canada-approved MS therapies.

b The federal government should establish nation-wide access standards for drugs needed to treat multiple sclerosis.

COORDINATE QUALIT Y LIFELONG CARE AND SUPPORT FOR PEOPLE WITH MS

Recommendations

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1 in 3 do not have access to information and

advice about exercise, nutrition and ways to

manage stress.

1 in 3do not have access to treatments, programs and services whether

they can pay for them or not.

1 in 4 do not have timely

access to disease modify- ing therapies (DMTs),

symptom management medications, and

rehab services.

Michelle has lived with progressive MS for over 30 years. Over the past two decades she has seen treatment after treatment

become available for those with relapsing-remitting MS, and while she is grateful for advancements in the field of MS research,

she is still waiting for a treatment that could help her.

Research takes time, I get that. . .but it’s a challenge to exercise patience when you’re the

one living with this disease — calls to action like this give me hope, which is a very powerful

thing when you’re living with progressive MS.

Michelle

Listening participants told us that living with MS is a barrier to a good QOL. When asked what one thing could most improve their QOL today, they told us: “Find the cure for MS.”

Advances in treatments for relapsing-remitting MS over the past decade have been remarkable, and people affected by MS would like to see the same for progressive forms of MS. Currently, there are no disease-modifying therapies for progressive MS.

Recently the MS Society partnered with the Centre for Drug Research and Development to speed the delivery of MS treatments, and ultimately find a cure for MS.

Develop therapies for people living with progressive MS within the next 8 years.Call to action

Federal, provincial and territorial governments need to increase investments in health related discovery science to fuel the development of novel therapies for progressive MS.

Federal, provincial and territorial govern- ments need to increase investments in the commercialization of health research including the early stages of the validation, de-risking and development of novel therapies through organizations such as the Centre for Drug Research and Development (CDRD), and the Quebec Consortium for Drug Discovery (Consortium québécois sur la découverte du médicament).

Federal, provincial and territorial governments need to restore Canada’s leadership as a place for human clinical trials by funding clinical trials infrastructure and improving processes related to ethics review and regulation.

ACCELER ATE PROGRESSIVE MS RESEARCH

Recommendations

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Despite the challenges of living

with MS, participants expressed an overall sense of hopefulness

about their future and a future free of this disease.

Currently there are no disease-

modifying therapies for primary-

progressive MS.

About

1 in 2people with relapsing-

remitting MS will develop secondary-

progressive MS within 10 years

of diagnosis.

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For more information about the Listening to People Affected by MS Initiative and the Calls to Action please visit:

mslistening.ca