Social Policy in Ontario

It was a lazy April Sunday — movies on the couch — when Erin Truax’s life took a numbing turn.

“I lost all of the feeling in my right hand … from my wrist down,” says Truax, a Toronto communications specialist.

“But I thought, maybe I slept on it the wrong way, and I just carried on with my day,” she says.

By the following Thursday the diagnosis would become much more dire, when doctors told Truax she had multiple sclerosis — adding the 38-year-old to a troubling and puzzling statistic.

Canada has a higher rate of multiple sclerosis than any other country, says Dr. Tom Parker, physician in chief at St. Michael’s Hospital. To combat the disease, today St. Mike’s will announce the creation of a $30-million multiple sclerosis centre that Parker predicts will be the largest and most prestigious on Earth for both patient care and research.

“The intent is to build the best clinical facility for MS in the world,” Parker says. “And the way you do that is you make sure it’s a facility that offers the best in education and research as well.”

The facility will be known as the Barlo MS Centre — after John and Jocelyn Barford and Jon and Nancy Love, who donated $10 million per family to the project. It will occupy the top two floors of the hospital’s new, 17-storey Peter Gilgan Patient Care Tower. The rest of the money is being raised through the hospital’s foundation.

While it will not open to patients until 2020, the centre has already recruited a leading MS researcher in Spanish neurologist Xavier Montalban as its head.

In particular, Montalban has led the field in the use of new drug therapies that have shown remarkable success in slowing the progression of the ailment.

MS is an inflammatory disease of the central nervous system that disrupts the transmission of impulses from the brain and spinal cord to the rest of the body.

It can cause numbness, vision loss, weakness, fatigue, cognitive impairments and a host of other symptoms.

It affects three times as many women as men and typically strikes its victims in the prime of life, with an average onset age of 34.

“It’s the most frequent cause of disability in young adults in a number of western countries,” Montalban says.

Yet while genetics certainly play a partial role in its development, MS has no known causes, making a cure an elusive prospect.

“But we have modified MS (treatment) in a very positive way and this is due to the number of drugs we have nowadays,” Montalban says.

In particular, he says, physicians now have 14 anti-inflammatory drugs at their disposal to slow or outright halt the progression of the disease.

“In fact the way we look to MS therapy nowadays has changed a lot,” Montalban says, noting that doctors now talk about the “non-evidence” of disease activity. “It’s like being free of disease. This is our target now in many patients.”

The new St. Mike’s centre will build on a decades-long focus at the hospital, which currently treats some 7,000 MS patients.

“It’s grown to be by far the largest clinic by patient population in Canada and among the largest in the world,” Parker says.

Patient care has been somewhat piecemeal, with the different specialties needed for optimal MS treatment being scattered in different locations.

The concentration of neurologists, specialized nurses, physiotherapists, social workers and neuropsychologists on two adjoining floors is one of the things that attracted Montalban to the centre.

“We will provide the most comprehensive care anywhere,” he says.

But it was also the large patient load the centre will inherit that drew him here.

Montalban says studies that can help fine-tune new drug therapies to individuals require the long-term observation of large groups of patients, through MRI imaging and other testing. Sorting patients by similar symptoms and levels of nerve damage can help establish which drugs will work best at a personalized level.

“This has been essential for the knowledge we have nowadays of MS,” Montalban says. “Nowadays we are able to make a very early diagnosis of MS (and) we can personalize the treatment.”

The abundance of patients at the St. Mike’s centre will make this city an epicentre of MS research, Montalban says.

And the willingness of patients to participate in such studies will only be bolstered by the quality of care the new centre will offer, says St. Mike’s neurologist Jiwon Oh.

“It’s really, really helpful as a neurologist,” she says, “because I’ll be able to provide my patients with the care that I think every patient deserves.

“And when you have a sense of excellence like that … we would have the ability to do many different kinds of studies in a very (satisfied and) motivated group of patients.”

While 85 per cent of MS patients have the treatable “relapsing remitting” form of the disease, there is currently no effective therapy for the 10 to 15 per cent of patients who develop the “progressive” variety.

There are only educated guesses about why Canada has such a high rate of the disease — one in 340 — the lack of sun-fostered vitamin D in our northern climate is a possible factor, Parker says.

Finding an effective treatment for progressive patients will also be a focus of the new centre, Oh says.

Included among the centre’s amenities will be a lab that will mimic workplace and household conditions and teach techniques to help patients manage their specific impairments.

For her part, Truax, who is on an anti-inflammatory drug and “feels terrific,” says the new centre gives her new hope and a pride in her city.

“Knowing I’ll be able to have all that support, so close to home in a one-stop shop … it gives me hope,” she says.

“It makes me realize there is a strong future for me, potentially without MS.”

https://www.thestar.com/news/gta/2017/11/22/canada-has-the-highest-rate-of-multiple-sclerosis-now-st-michaels-hospital-is-launching-a-30m-centre-to-fight-ms.html