From Lawyer to Fighter: How I Became an Advocate for ALS

This is an article I never wanted to write. This is a story I never wanted to be mine.

In May 2019, I was diagnosed with amyotrophic lateral sclerosis (“ALS”), also known as Lou Gehrig’s disease. In the two years since then, my life has changed completely. Once a practising lawyer and active father and husband, I can no longer walk, carry a cup of coffee or pick up my children. ALS is now even taking my ability to speak.

But I’m sharing my journey with you, the B.C. legal community, because I am now one hundred per cent committed to ALS advocacy. By sharing my story with you, I am hoping you can join me in ending ALS for good.

With everything I have, I am working to help build a movement to #EndALS. I’ve helped found a patient-led organization, ALS Action Canada,¹ with families impacted by ALS from all across the country.

For the first time ever, ALS patients and their loved ones have real hope in the form of promising new drug therapies. At ALS Action Canada, we are working fiercely to bring these therapies, new clinical trials and research investment to Canada.

But this was never my plan. Or my family’s.

HOW IT STARTED: A DEVASTATING DIAGNOSIS

For almost 20 years, before ALS came crashing into our lives, I was a lawyer. Called to the bar in May 2002, my first job was at Lawson Lundell in Vancouver, where I had articled. I practised labour and employment law there for several years.

At that point, my wife Adrienne and I didn’t have children. We knew we wanted kids, so before trying to start our family, we decided to take a year off work and just travel together, our last big trip as a couple before the responsibilities of parenthood.

So we saved some money, quit our jobs, packed up our VW van and took what ended up being the trip of our lives, driving all the way down to the Panama Canal and back again. We hit what felt like every deserted beach, taco stand and small town along the way.

When we got back to Vancouver, I worked for a while at a legal non-profit, then joined TELUS as an in-house counsel, specializing in employment, pensions and benefits law. Adrienne began teaching elementary school. We eventually bought a house in North Vancouver and were lucky enough to start our family.

We now have two beautiful kids, a boy and a girl, aged ten and eight. Before ALS, our life was busy and happy, full of activities, friendships and strong family relationships.

Then came the diagnosis that shattered our lives. I took four months off to process the devastating news, but also to make a summer full of good memories with Adrienne and the kids. I returned to part-time work that fall, but the quick progression of my disease forced me to stop working in April 2020.

I’m now a former member of the bar of British Columbia. But I remain an advocate, probably a fiercer one than I ever was at the bar, now on behalf of ALS patients and everyone impacted by the disease.

THE SICK TRUTH ABOUT ALS

ALS is unrelenting, and it can affect anyone, of any age, at any time. Currently, there is no cure.

A neurological disease, ALS gradually and insidiously paralyzes you because your brain is no longer able to communicate with the muscles of the body that you can typically move at will. Over time, as the muscles of your body break down, ALS will take away your ability to walk, talk, eat, swallow and, eventually, breathe.

Eighty per cent of people with ALS die within two to five years of being diagnosed. Those who live for longer than five years usually rely on a ventilator through a tracheostomy and can only communicate with their eyes and eye-gaze technology. It has been described as living in a glass coffin.

Despite the fact that ALS was first identified 160 years ago, and Lou Gehrig died of it 80 years ago, there are currently only two drugs approved by Health Canada to treat it. Neither is particularly meaningful. For the patients who respond well to the drugs, the most they can do is extend your life by months, not years.

In my case, I have gone from being able to travel to Montreal on my own in December 2019 (to participate in a clinical trial) to now not being able to leave the house on my own.

At the start of 2020, I could walk unassisted, dress myself, shower on my own, eat with a fork, tuck my kids in at night, drive a car, work and do almost everything I had previously done, except for skiing, riding a bike and lifting heavier objects.

At the start of 2021, I can no longer do any of these things and, as mentioned, am losing the ability to speak.

Almost everyone with ALS experiences falls, and in 2020 I fell multiple times—on the seawall, on the street, in my carport, in my bedroom—going down as hard and fast as a cut tree, as I did not have the coordination or strength to break my fall. There have been very few days during the COVID- 19 pandemic when this disease has not taken something from me physically or beat me up mentally—often both.

And yet, despite all this, I am still here, which is not the case for many people two years after their diagnosis. I am still very much a partner to Adrienne, although she now carries ninety-nine per cent of the load.

And I can still be a dad to my kids (they sometimes call me “Disability Dad” now). I can still watch soccer games (subject to COVID rules) and after-dinner dance routines, ask how recess went and explain why we are not getting a dog. I am still the essence of me.

HOW IT’S GOING: A TIME OF UNPRECEDENTED HOPE

These days, most of my physical and mental energy is spent on ALS advocacy. There are two things that drive me to fight, and fight hard.

The first is that this is a time of unprecedented hope for people with ALS. There are over 80 clinical trials underway worldwide, some very promising, and I still have hope that I will benefit from their many advancements in research and development of new drug therapies.

A Cambridge, Massachusetts–based company, Amylyx Pharmaceuticals, will be applying very soon to Health Canada for the most promising drug therapy yet, AMX0035.² Its clinical trial was overseen, designed and led by clinicians at the prestigious Sean M. Healey & AMG Center for ALS at Massachusetts General Hospital.

It is the first drug therapy proven to slow down the neurodegenerative process of ALS and is the first time a drug candidate has shown a positive impact on both an ALS patient’s ability to function and live longer.

I am currently focusing my advocacy efforts like a laser on urging Health Canada and the provincial governments to swiftly approve—and cover under provincial health plans—AMX0035.³

Canada’s track record for drug approvals for ALS has been abysmally slow, often taking two to three years after the U.S. FDA to approve a drug for ALS. This was the case with Radicava, only the second approved drug for ALS in Canada. It took Health Canada six months to approve it, and B.C. almost two years more after Health Canada. People with ALS simply do not have this kind of time to waste.

For people with ALS, Health Canada’s approvals of COVID-19 vaccines prove that where there is the political will, approvals can be done in weeks.

As for ALS clinical trials—currently the main source of hope for ALS patients—they are only in Alberta, Saskatchewan, Ontario, Quebec and New Brunswick. British Columbia inexplicably does not offer them.

As a result, I have had to travel 22 times in two years to Montreal to participate in clinical trials and to be overseen by a neurologist who is dedicated to finding new ALS treatments. In contrast, British Columbia’s ALS Clinic is a suite of dingy rooms in the basement of the ancient GF Strong Rehabilitation Centre, has no full-time neurologist on staff and offers no trials. It doesn’t even have a standalone website.

The difference in culture between the B.C. ALS clinic and the Montreal ALS clinic is striking. In Montreal, the culture is “We will overturn any stone to help you live.” In British Columbia, the attitude is “We are here to chart your progress as you die.”

This brings me to the second reason I fight.

CANADA NEEDS TO STEP UP ITS GAME

ALS treatment and care in much of Canada, including British Columbia, are failing the 3,000 families across the country currently living with this disease. For example, British Columbia does not offer any clinical trials. And the B.C. government invests zero dollars in ALS research.

I am determined to see this change, so that families who will unfortunately come behind me will receive better support and treatment.

In Canada, ALS kills 1,000 Canadians (about 150 British Columbians) every year. Another 1,000 Canadians are diagnosed with the disease each year. Yet it is a disease that our provincial and federal governments essentially ignore.

Consider these facts:

• It is not clear if any B.C. government has ever funded ALS research.
• The federal government made a significant one-time investment in ALS research in 2015, and it appears that it has made no meaningful investment before or since then.
• The ALS Society of Canada oversees the ALS Research Program, which is the only dedicated source of ALS research funding in Canada. In 2020, the program had only $1.65 million to allocate to researchers. Most of this funding was not contributed by any level of government, but by people with ALS and those who love them, through small, grassroots efforts like walks and bake sales.
• The ALS Society of BC was able to allocate only about $250,000 of its 2019 funding to research because it is primarily focused on maintaining its equipment loan program (wheelchairs, bed lifts, etc.).
• The right to die by medically assisted suicide has been in front of the Supreme Court of Canada twice, in 1993 and 2015. Both cases were brought by people with ALS (both from British Columbia).
• Sean Tagert, a father of a young son, living in Powell River and battling ALS, chose to die by medically assisted suicide in August 2019. Vancouver Coastal Health had refused to fund the full-time care Tagert came to need and instead told him his only option was to move away from his son and into a care facility in Vancouver. Tagert chose death. Before he died, Tagert said there needs to be a public outcry about ALS treatment and funding in British Columbia.

JOIN THE MOVEMENT TO #ENDALS

My ALS advocacy began, and still continues, on Twitter , where I share my journey, re-post breaking news about ALS and call on our politicians to act.

As noted above, in February 2020, I helped found ALS Action Canada, a patient-led organization of families with ALS.

Together, we are fighting for faster approvals and full coverage for ALS treatments, increased federal and provincial government investment in research and increased access to clinical trials.

There are many ways you can help us.

You can amplify our voices and press our governments to do better by following and sharing our posts on Twitter, Instagram  and Facebook . Use the hashtag #EndALS. You can e-mail your political representatives directly. All they need to hear is that:

1. improving ALS treatment options, care and research is an issue that you care about; and

2. this is a time of unprecedented hope for people with ALS, but we need strong and urgent action from the federal and provincial governments to turn this hope into a reality.

You can donate to our campaign,⁴ which is helping to raise $2.5 million to create a proper ALS clinic in British Columbia with a full-time clinician director and to move the existing clinic to the Djavad Mowafaghian Centre for Brain Health at UBC (a research centre that also has clinics for all other major neurological diseases, like Huntington and Alzheimer’s disease).

We can do this. In March and April 2021, the B.C. government issued ICBC rebate cheques averaging $190 per person, for a total of approximately $600 million. If everyone in B.C. agreed to donate five per cent of their cheque (less than $10), we could raise $30 million for ALS research and clinical trials.

This would be an unprecedented amount of funding in Canada.

My story is not the only ALS story. ALS Action Canada currently has over 50 member families from coast to coast, each with their own story of devastation, courage and hope, and each advocating for ALS. You can find many of their stories, as well as our full plan to improve ALS treatment and research in Canada, on our website.

I am incredibly grateful for the support I’ve already received from so many friends and colleagues in the legal community. Everything you have done, and will do, to help #EndALS is so appreciated by me and the other 3,000 families in Canada impacted by the terrible disease that is ALS.

Truly meaningful research is being done, and we are getting closer than ever to a cure. After 160 years of this terrible disease, and 80 years since Lou Gehrig died, now is the time to make it happen.

It’s time to finally #EndALS, so no one will ever have to go through what my family and I are going through, ever again.

ENDNOTES

1.Online: <www.alsactioncanada.org>.

2. Amylyx Pharmaceuticals, Inc., News Release, “Amylyx Pharmaceuticals Plans Regulatory Filing of AMX0035 for the Treatment of ALS in Canada” (9 March 2021), online: <www.businesswire.com/ news/home/20210309005180/en/Amylyx- Pharmaceuticals-Plans-Regulatory-Filing-of- AMX0035-for-the-Treatment-of-ALS-in-Canada>.

3. ALS Action Canada, News Release, “ALS Action Canada Issues Media Release Urging Health Canada and the Provinces to Swiftly Approve AMX0035” (10 March 2021), online: <alsaction canada.org/als-action-canada-issues-mediarelease urging-health-canada-and-the-provinces-toswiftly approve-amx0035>.

4. ALS Action Canada, “Help #EndALS Now!”, online: <alsactioncanada.org/donate>.