MS Society calls for more government supports amid research breakthroughs

The MS Society of Canada is asking the government to do more to support those living with the condition as a part of Multiple Sclerosis Awareness month, happening in May.

Those with MS, which amounts to over 90,000 Canadians, are a part of the immunocompromised population who have been seriously impacted by the COVID-19 pandemic.

Karen Jacoby was diagnosed with a very progressive form of MS in 2020 at the beginning the COVID-19 pandemic.

“It was a very isolating experience for me because MS is an autoimmune disease. I am considered at high risk. So I kept my interaction with others to a minimum. And I said no to several invitations because I couldn’t risk exposure,” said Jacoby.

“Although COVID challenged us to a new normal, I kept reminding others that it was only temporary. I have had to confront the reality of my Ms diagnosis and how that new normal will be permanent for me.”

The condition also means she is unable to work, making it difficult to keep up with the costs of treatment during a time when the cost of living is soaring.

“There’s a lot of expenses, physiotherapy disease modifying infusions, in my case to keep me out of a wheelchair, are $33,000 annually without coverage.”

Jacoby said there are also a number of smaller expenses that add up – things like special footwear, mobility aids and adult diapers.

‘When MS stops somebody from working, they should be able to access adequate income and disability supports. There is a massive gap with what people with disabilities need to survive,” she explained.

More MS supports from federal, provincial government needed

The MS community has called on the federal government to follow through with income supports for Canadians with disabilities proposed last year in the Canada Disability Benefit plan and to ensure that those with MS are eligible.

“MS is considered an episodic disability as well as progressive. And so that means that there are periods of wellness followed by periods of disability … So they have issues with eligibility and not being able to access enough supports to make ends meet,” shared Julie Kelndorfer, Director of Government Relations and Advocacy for the MS Society.

Kelnedorfer said the plan is still in the design phase and they are hoping the legislation, with this inclusive language about episodic disabilities, gets tabled before the end of the current House of Commons session on June 23.

“We know that this could really increase the joyfulness and the capability of people living a full life, having a disability, because disability comes at a very high cost and many people are living below the poverty line,” added Jacoby.

She adds MS is known as the snowflake disease because everybody expierences it differently, but “our one common need is income security.”

“I think COVID has really shed light on inequities and the inconsistencies and the gaps in our systems,” said Kelndorfer. “And so without additional income support, people are getting further and further behind.”

In addition, with the provincial election just days away, the MS Society of Canada is working to make candidates aware of their concerns through a digital letter writing campaign.

Along with advocating for affordable and timely access to treatment, they’re also focusing on housing.

“We’re pushing for investments in care, and that’s home care, to be able to allow people to live at home for as long as possible and not have to, and I say this specifically, end up in long term care,” said Kelndorger. “We really want to ensure candidates know that we need more options for people to be able to have accessible, affordable housing in their communities of their own choosing.”

MS Walk to fund new research, possible connection to Epstein Bar

COVID-19 not only affected the way those with MS can live their lives, but led to a decline in fundraising efforts for the MS Society. “It has put in jeopardy the research momentum and missing out on important new breakthroughs. So we are all doing what we can to get back on track,” said Jacoby.

The organization is hosting a country-wide MS Walk on May 29, both in-person and online to raise awareness and funds.

“This is a community-driven event that unites all who are affected by multiple sclerosis and shows those living with the disease that they do not have to face this alone,” said Jacoby.

The funds raised go towards programs supporting those with MS as well as research into the disease. A recent study published by Harvard University has established a possible link between the Epstein Bar virus, commonly known as mononucleosis, and MS.

The 20-year study looked at blood samples from the U.S. military and found anyone who ended up being diagnosed with MS had also previously been infected with the Epstein Bar virus.

“So that really, I think is hopeful. Actually, if you think about it like dominoes, you have all of these risk factors and Epstein Bar virus being one of them. If we could stop that, prevent that, perhaps through a vaccine – I think then we could, then stop the disease from prevent it,” explained Kelndorfer.

Kelndorfer said these funds will go towards looking at different components of MS and with this new discovery, they will likely coneven a group of researchers to determine what the next steps are.

Jacoby tells CityNews she will be participating in the Toronto MS Walk at Downsview Park this year. For more details and where you can find your local event, click here.

With files from Meredith Bond