Do I have your attention now?

05 Nov 2025 Stroke awareness

The power of the collective voice of lived experience

John McGowan at the “Every Minute Counts” Side Event, New York, September 2025

The Global Stroke Action Coalition (GSAC), convened by the World Stroke Organization, includes members from professional societies, stroke support organizations and industry. The Coalition is focused on five policy priorities that call on global leaders to:

(1) Make stroke a priority part of national non-communicable disease (NCD) strategies

(2) Develop National Stroke Action Plans

(3) Commit to funding stroke action now

(4) Implement robust stroke monitoring systems

(5) Include stroke survivors and caregivers in policy development.

The GSAC recognises the importance of facilitating the meaningful involvement of people with lived experience in this initiative. The Lived Experience Ambassador Group brings together stroke advocates from across the world:

Michelle Ballasiotes (USA)
John McGowan (Canada)
Angela Yeo (Singapore)
Melinda Roaldsen (Norway)
Richard Djan-Krofa (UK)
Joseph Rukelibuga (Rwanda)

The Ambassadors have collaborated in advocacy events and communications, and attended media training. A member of the group John McGowan, joined the GSAC high-level side event titled “Every Minute Counts” on the eve of the United Nations High-Level Meeting on NCDs in September in New York. John gave an impactful opening statement at the event, alongside GSAC co-Chair Professor Bo Norrving.

John says ‘ Because the Ambassadors were able to work on this statement collaboratively and we had the advantage of so many different viewpoints, our talk (short as it was) resonated with a wide cross section of attendees. So this was our work. I was just a conduit.’

JOHN MCGOWAN – Opening Statement “Every Minute Counts” Event, 24^th September 2025

I’m John McGowan from Toronto Canada. I had a stroke. I can walk and I can talk. That’s because of the type of stroke I had, not because of the treatment I received. Still, I had it easy.

The agenda has me speaking on the importance of involving people with lived experience in the policy making process in establishing a platform for urgent action on stroke. One that understands that every stroke is different. That’s important. Unless you have a good cross section of people with lived experience participating in the process, you won’t know whether your protocols and systems are effectively dealing with the matter. One of our team members had a stroke that was pre-natal. The range is huge, and can’t be addressed without enough lived experience voices to illustrate this.

But it’s not as important as deciding to establish a policy and protocols to deal with stroke quickly and effectively.

Here’s why it matters. If strokes are managed quickly the impacts can be minimized or even eliminated. Not always, but often. My story isn’t especially interesting. I was a lawyer. I haven’t been able to work in 12 years because of the cognitive impacts arising from the stroke. I used to pay a lot of tax. Now I don’t. Do I have your attention now?

I chair a peer support group for stroke survivors in Toronto through March of Dimes Canada. Our members are a subset of stroke survivors – those who can get out of the house, or apartment, or tenement. Most of them are not working. Most of them do not have insurance. They aren’t paying taxes. They can’t afford home care at the level they need. So their spouse, or child, has to take care of them. Which means that if their caregiving family member was employed, they may not be able to work. And certainly cannot work at the level they had been.

So your tax revenue goes down. Your health care expenses go up not just because of the stroke survivor, but because of the stress this puts on their families. There are people here better qualified than me to speak on the prevalence of depression after stroke. All of which means additional healthcare costs. If they’re lucky they can afford groceries. But they are not patronizing local businesses, or growing the local economy.

Stoke affects everyone. If you haven’t had a stroke, someone in your family has. Or someone you know has, or you know someone who is caring for a family member who has had a stroke. Maybe it’s someone you work with, in which case you’ve seen the effect on your co-workers.

I have a lot to say about the societal and relational impacts of stroke. But not in four minutes.

If my stroke had been addressed quickly I would probably still be working. And paying taxes. Every country has its own issues about health care delivery. But the need for urgent action on stroke is universal. I ask you to go back to your ministers of finance and tell them we need to address this. I expect them to tell you that you can’t afford to. I hope that today you are provided with the information you need to tell them this: we can’t afford NOT to.

https://www.strokeactioncoalition.org/

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