Young activist not finished fighting for all diabetics

Maya Webster was just seven years old when she started a petition to take to Queen’s Park three years ago.

Last week, the request on her petition was granted.

Diagnosed at the age of two with type 1 diabetes, Maya’s experience with the disease turned her into an advocate for provincial medical coverage for life-saving continuous glucose monitors, a game-changer for diabetics who struggle to control their sugar levels with frequent finger pricks.

The petition she started in 2019 was just the beginning of her efforts, which included two trips to Queen’s Park, the most recent one to speak at a rally attended by many others, diabetics, family members and politicians. Their goal was to convince the province that the $4,000 cost of the monitors, out of reach for many without benefits, should be covered by the government.

On Friday, Minister of Health Christine Elliott, announced that coverage for real-time continuous glucose monitors would be made available through the province’s Assistive Devices Program, beginning March 14 — to some with type 1 diabetes, although not all.

“Eligible individuals include those with type 1 diabetes who are at risk of severe hypoglycemia or who are unable to recognize, or communicate about, symptoms of hypoglycemia,” the government announcement said.

In the summer of 2019, Maya began going door-to-door through her Glendale neighbourhood for signatures on her petition, and set up tables locally, including one evening at Phil’s Independent (then Valu-mart) to ask for support.

She was already benefiting from the monitor, but she wanted to ensure it was available for those who couldn’t afford the cost. 

With a continuous glucose monitor, Maya wears a small sensor on her arm that automatically tests sugar levels every few minutes throughout the day and night, instead of the 10-times daily finger pricks. It saves many hospital trips that were necessary before she began using the monitor, which is more accurate and avoids long stretches between testing, she explains.

Maya also wears an insulin pump on her leg — the continuous monitor on her arm tells the pump what to do. The pump is funded by OHIP, the monitor is not.

The monitor also has an alarm that notifies her and her mother through their phones of low glucose levels, allowing them to take action to prevent health emergencies and keep her out of the hospital.

Maya understands she is fortunate — although her family’s drug plan helped cover the cost of the monitor, she knew of others  with type 1 diabetes, including some of her young “diabuddies,”  whose families don’t have coverage, and who have had to rely on finger pricks to determine their sugar levels.

There was a time when Maya’s family was without benefits, but when her mother’s employer, Bethesda, which supports and provides programs for special needs children, decided the monitor should be included in its benefits package, Maya learned how much better her life was with it, and wanted others like her to have the same experience.

MPP Wayne Gates has helped Maya every step of the way, going door-to-door with her, standing outside grocery stores, and taking her petition to Queen’s Park.

“Above all, Maya never lost sight of her goal,” says Gates. “I told the Minister of Health at the time that this seven year old was a force that could not be ignored.” And Friday’s announcement proved that, he added.

At their home on Sunday, Maya and her mother Christi were elated with the announcement. Maya says she wasn’t always convinced this day would come, “but I was sure hoping.”

“It always seemed like a realistic goal,” adds Christi, “but a distant one.” She has a sister with diabetes, a dairy farmer without benefits, who will hopefully now be able to purchase a monitor, she says. A Facebook page for young people with diabetes shows “ a number of children are very excited.”

Christi explains government assistance is now being offered to type 1 diabetics with hypoglycemia and don’t recognize the symptoms — she uses the term hypo-aware —  which means their glucose level can be lower than normal, without them realizing. That would apply to “a fair number” of people with type 1 diabetes, although not all, she says. They are, however, the most vulnerable, and the ones who would benefit most from the monitor alarm telling them they need to do something quickly.

Maya says she has two more goals to accomplish — one she has spoken of often, which is her determination to find a cure for diabetes, the other, more immediate, to advocate to expand coverage of the monitor to all those with diabetes.

Gates can’t say enough about the Websters’ determined efforts to have funding approved. There have been many others in recent years who have lobbied for the coverage, but Maya, who is a self-confident and very articulate youngster, has definitely made an impact.

“People were dying,” he says, addressing Maya and Christi. “You are saving lives by what you have done since 2019.”

It’s unfortunate it has taken so long, he adds, “but you didn’t give up, and they finally listened.”

He recalls the rally outside Queen’s Park in October, 2021, with a large gathering of people, including some of Gates’ colleagues. Maya had a megaphone, and started a chant, “CGM for all.” She received a lot of attention that day, he says.

“It helped Maya and other families put a personal face on what we have been asking for,” says Christi.

“Maya did a great job of gaining support,” adds Gates. “I was honoured that she took me along on this journey. She made people aware of the need, and the whole community rallied around this special young girl who said ‘I already have it for me, and I want it for others.’ She never gave up, her family never gave up, and her community never gave up.”

Christi says she and her family “can’t thank Wayne enough. We had the experience, he had the voice to speak for us. It was definitely a team effort. It wasn’t just a mom and a girl going door-to-door. It was a whole team rallying around us.”

Steve Hardaker is one of those community members who signed Maya’s petition when she knocked on his door, and is grateful for her advocacy and the government decision to fund the monitor.

As a person living with type 1 Diabetes for 45 years, he says he’s seen many advancements to help diabetics better manage this chronic, life-threatening disease. For the last two years he has been using an insulin pump with a continuous glucose monitor.

The monitor is especially important for those like him who are unaware of the glucose lows — its alarm woke him up at 3 a.m. just a few days ago, he says. It meant he was able to get up and have something to eat, avoiding a much more dangerous situation that can lead to unconsciousness and an emergency trip to the hospital — or worse.

“The alarm is a life-saver for many diabetics.”

The monitor has also improved his health by lowering his glucose level from a dangerous 8 to a much-improved 6.4, in less than a year. The specialists he sees regularly throughout the year are impressed by the improvements in his health since he began using the pump and continuous glucose monitoring system.

He has a drug plan that pays a portion of the monitor and other supplies, but many diabetics are not so fortunate, he says.

“There has been a lot of advocacy in the last couple of years, and a lot of pressure on the government. I’m so impressed by Maya. I remember her knocking on my front door with her petition, and I’ve been a big fan of hers ever since.”