Hunter Guindon: An Advocate’s Journey

My journey to advocacy started last winter when I was hospitalized for three weeks with a lung infection. I had plenty of time to browse the internet, and after hearing of the FDA approval of Trikafta, I was confused as to why it wasn’t available in Canada, the “leader in CF care”.

My research led me to CF Get Loud on Facebook, and my deep dive into advocacy started there.

While still in hospital, I started e-mailing MP’s and MLA’s from across PEI. I had no experience communicating with government officials. I went headfirst into advocacy. Although inexperienced, I held the mind set that these elected officials work for us, and that if I didn’t speak up for myself, and the others in my community, that perhaps nobody would, and I wasn’t going to let that happen. I knew I needed to be loud.

Once out of hospital, I doubled down my efforts. Instead of waiting for my MP’s office to e-mail me back, I went right into his office. I asked for the earliest possible meeting. To my surprise, he had a half an hour free that day. I quickly went home, gathered my materials, and returned an hour later for the meeting. I wasn’t going to turn down an opportunity to have a decision maker’s ear.

I started requesting weekly follow-ups from officials, I started attending Health Committee meetings in person at the legislature, and I started compiling a list of cell phone numbers and direct lines to these officials.

Just prior to COVID, I attended a presentation to the Standing Committee on Health by the PEI Lung Association. Prior to sitting in on these meetings, I didn’t even know that folks could make their own request to appear before a committee. This was all very new to me.

After sitting in on that meeting, I went home and immediately e-mailed the chair of the committee. I knew that getting before this committee would have a profound impact on my advocacy, and the awareness of this issue among politicians. The chair quickly got back to me and advised that committee presentations are booked well in advance, and that if I wanted to present, I would have to get my request in early.

The next day, I sent a formal request to the committee clerk to appear before the committee.

Then COVID hit.

The day after the summer legislative session ended, I e-mailed the clerk again, to keep my name top of mind, knowing that committees were going to begin meeting again. The clerk responded quickly, and advised that she would add it to the agenda to discuss while the committee develops their work plan for this session.

In developing their work plan, the committee decided to have me present. Later that day, the clerk e-mailed me with a request to appear.

I had met with a few of these members in person prior to this presentation, and spoken with many more through e-mail, about this issue. They understand that this issue is incredibly important, and that it affects real people in their community.

The CF Get Loud team was incredible in helping me build a presentation that checked all the boxes. The committee gladly welcomed me into the legislature and were prepared for my presentation. My own MLA (who is not normally on the committee) found out that morning that my presentation had been moved from the afternoon session to the morning session, and quickly changed her plans in order to make it down to the legislature for the presentation as well.

The committee listened with compassion, intent, and interest. They asked meaningful questions and were keen to help. I had some wonderfully hopeful conversations with some committee members in the halls of the legislature following the presentation. These folks want to help.

The committee agreed to put a recommendation to the Minister of Health about the need for Trikafta to be added to the provincial formulary in their committee report, citing the fact that the Minister is required to formally respond to the report, and cannot just ignore it, like they could a simple letter from the committee.

I have since had conversations with some committee members and the Minister of Health, and the conversations seem hopeful.

Our elected officials work for their constituents, and it’s our job to let them know what we need. You don’t have to be a lobbyist, a political junkie, a pharmacoeconomist, a policy expert, or a doctor. The story of one’s life with CF is important, and powerful, all you need to do is tell it.

One person really can create waves of change.

Check out Hunter’s Powerpoint presentation to PEI Standing Committee on Health