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About a year after Luke Janzen was diagnosed with Type 1 diabetes at nine years old, his mother, Karin, knew something needed to change.
The diagnosis had been hard for Luke’s family and Karin said she vividly remembers the day they were going to bring Luke home from the hospital. They were standing there, ready to go, when the doctor asked Luke if he had any questions.
He said, “I just have one. When am I going to get better, and this is going to all be over?”
“Buddy, this isn’t going to go away,” Karin said.
For Luke, diabetes was a permanent thing. There was no end to the finger pricks or the eight to 12 injections a day.
According to Diabetes Canada, around 10 per cent of Manitobans live with diabetes. That increases to 15 per cent when you include undiagnosed cases. Diabetes can have many impacts on people’s lives including putting them at risk of blindness, kidney failure, or heart attacks. If untreated, it can lead to death.
In the months after his diagnosis, Luke learned to accept living with diabetes and went about his life mostly as he had before. Then about a year later Karin started noticing a change.
“Most 10-year-old boys are eating ferociously, right? Always snacking. Always wanting stuff. I noticed that he started to lose weight because he would refuse food. He had gotten on to the idea that if I have a snack, then I’m going to have to get another needle,” Karin said.
Luke remembers this shift as well.
“I would say no and deny myself a lot of basic stuff. I don’t really want to do another needle, you know, especially if you’re in a public area. I [would have to go] to the bathroom and go to a stall and do an injection,” he said.
Karin said it was so hard for her to see Luke living with that mindset. Being underweight also made it more difficult to find places on Luke’s body where they could inject the insulin properly.
So, Karin started doing research.
They came across a vlogger, DiabeticDanica, who introduced them to the insulin pump. They saw everything the pump could do and decided it was time to get one for Luke.
The pump injects insulin at the press of a button. Users only have to change the injection site every few days, which means being poked a lot less. It sounded ideal.
The problem was that in 2011, the pump cost around $8,000 and wasn’t covered in Manitoba. It was covered in many other provinces including Ontario and British Columbia, but Manitoba hadn’t adopted the pump program yet.
This didn’t seem fair, so Karin became a healthcare advocate — someone fighting for a healthcare change, like accessibility to a medication or technology.
Manitoba is often late to adopt or cover new healthcare advances even after years of advocacy from groups or individuals. Healthcare advocacy in Manitoba is governed by a lot of factors. One challenge is many Manitobans hold conservative political views, which often go hand-in-hand with not wanting to increase budgets and having reservations when it comes to changes in public policy, but healthcare advocacy is a piece of the solution to getting Canadian patients access the medical care they need.
Many advocates get involved with medical advocacy because, like Karin, they are caring for sick loved ones who currently don’t have access to the medical care they need or they have health conditions themselves and are not satisfied with the treatment they are getting. Most are volunteers who also have jobs, families, and other commitments. Advocates can be under a lot of pressure from their communities to get results. They may also get pushback from the community because they are fighting for a cause that some may not agree with.
Reaching medical advocacy goals often comes down to how much it will cost the government to provide Manitobans access to the technology, drug, or treatment and how else the government could use that money. Most advocates are fighting for something worth the cost, but with finite resources, decision makers have a lot to consider.
After years of work, the insulin pump program was instated in Manitoba. What eventually made the biggest difference was bringing their fight for the pump to Joy Smith, who worked in the House of Commons of Canada as the Manitoba Caucus Chair. Smith connected with Luke’s story, and ultimately joined them to make this change so that all kids living in Manitoba who needed an insulin pump could access one free of charge.
Diabetes: The Insulin Pump
In 2011 Karin started emailing, calling, and knocking on doors trying to gain traction on her call to have insulin pumps covered by Manitoba Health. She contacted clinics, advocacy groups, and politicians.
Karin either got no response or was told that people were already trying to get the province to listen. She tried for months without success.
A study published in 2021 found that, especially for those without private insurance, government coverage of the pump made a real impact on people living with diabetes. It cited that financial freedom was the biggest quality of life boost.
Karin persevered until she got in contact with Joy Smith in 2012. Smith agreed to meet with Karin and wanted to talk to Luke about the challenges he faced.
So, Karin went to ask Luke if he’d be up for it. To her surprise, Luke was excited to talk to Smith and was ready to do what it took to get the pump. Shortly after, they went to visit Smith. Karin said, Smith was instantly interested in Luke’s story and what he had to say.
“You know, being a little kid, I was again so surprised that he was very open speaking about it with her because he was so shy. He seemed to understand what this could possibly mean. I think she really appreciated hearing about it,” Karin said.
During the meeting, Smith asked Luke if he would be willing to go to Ottawa to speak in front of a group of politicians. Karin said she is still shocked that he gave such a firm and confident “yes.”
At the end of their meeting, Karin said Smith seemed ready to get to work and make some changes. Having Luke there was pivotal to convincing Smith this was a real issue for Manitobans, Karin said.
The Janzens waited for an update from Smith. Karin said she was hopeful and thought Smith had seemed determined when they left the meeting.
Luke didn’t have to get up on stage in Ottawa. A few months later, they got a message that the pump would be covered, at least until he turned 18.
In 2013, at 12 years old and three years post-diagnosis, Luke received his first pump.
Luke said access to the pump changed his life and how he felt he could function. He said he could stop worrying about having a snack, or going out with friends or eventually moving out. It made his life that much easier and gave him a real sense of freedom.
“It kind of takes a lot of stress out of the 24/7 management. It eases up that nervousness that you’re always needing to be on top of everything,” he said.
One of the pump’s most useful functions for someone with diabetes is the ability to schedule insulin application based on when they generally go high or low in a day. For people living with diabetes who aren’t always aware of changes in their blood sugar level, this is vital.
When Luke’s blood sugar is high, he gets easily agitated and very tired. He is also always thirsty, as his body tries to flush out the sugar from his system. When he’s low, he can’t concentrate, he gets dizzy, and he’s constantly hungry.
Luke has coverage for the pump until he is 25 years old. He works in manual labour and says he’s worried about the pump breaking after his coverage ends in the summer of 2025. That would mean spending thousands of dollars out of his own pocket to replace it.
To receive an insulin pump under the Young Adult Insulin Pump Program, you must meet several requirements. Some of these include being between 18 and 25 years old, living with Type 1 diabetes, and having a recommendation from an endocrinologist.
Diabetes Canada has a chart outlining coverage for insulin pumps across Canada, which was last updated in April, 2021. The chart shows that half of the 14 jurisdictions cover insulin pumps for anyone that meets the criteria, without considering their age.
The pump is available in Manitoba, but those who don’t have private insurance must pay their pharmacare deductible. This option is more accessible than paying full price, but those older than 25 who need the pump are out of luck.
Luke is 22 years old, three years away from the age cap. Luke says he’s crossing his fingers that the age cap gets bumped, or someone starts advocating for it.
HIV: Pre-Exposure Prophylaxis
In light of how hard it was to get the insulin pump covered, Nine Circles Community Health Centre has an even bigger challenge advocating to make Pre-exposure prophylaxis (PrEP) more accessible because of stigmas around HIV and sexual health.
PrEP is an HIV prevention medication taken before sex and depending on the current recommendations, sometimes followed up by a second dose 24 hours later. According to the Centers for Disease Control and Prevention (CDC), “PrEP reduces the risk of getting HIV from sex by about 99 [per cent] when taken as prescribed.”
In 2015, Nine Circles began advocating for PrEP by trying to convince the province it was an easy solution for preventing HIV in Manitoba. Along with other groups and individuals. they brought forward the research behind PrEP and presented it to the provincial government.
PrEP is being used across Canada, providing a sense of security and safety for those at risk for HIV. At the time in Manitoba, PrEP was not covered by the province but under private insurance. Without coverage, PrEP is currently around $250 a month.
Mike Payne, executive director at Nine Circles, was leading the push from their side to get PrEP on the province’s radar.
Payne started working at Nine Circles in 2005 and has been working in healthcare advocacy for over 30 years. He is well-versed in how advocacy functions in Manitoba. Payne’s past work includes serving as Executive Director for AIDS Shelter Coalition of Manitoba.
“PrEP has been around for a long time, but Manitoba was really slow to uptake PrEP in a couple of ways. The most important way was getting it on the formulary to make it more financially accessible,” Payne said.
The Manitoba Drug Benefits Formulary is a list of supplies and medications covered under Manitoba Pharmacare.
Even after coming together to compile official recommendations in 2017, Nine Circles’ efforts to convince the provincial government of PrEP’s importance had very little effect.
“If politicians don’t think it’s going to be an election issue, they may not move, right? It’s not great to think that but sometimes that’s true,” said Payne.
After continuing to push the provincial government to make PrEP more accessible with no success, Payne and the organization knew they had to take a different approach. They wanted to find people willing to share their personal stories.
“We were kind of gauging people’s comfort to speak up about it. And we also started working with folks that we knew through Nine Circles and other organizations about their readiness to share their stories,” said Payne.
Payne realized that community involvement would be incredibly important throughout the advocacy process. But it wasn’t as easy as just asking.
“I think it’s a conservative province in a lot of different ways and it took people a lot longer to get here than it did in some of those larger urban centers,” Payne said.
Any issue involving sexual health carries stigmas around it, and viruses like HIV make it substantially harder to get people to share. Payne said that when he reached out in 2018 and 2019, many folks were hesitant because of what people would think or because of fear from negative experiences in their pasts.
“We carry a lot of internal baggage about our sex lives and being able to talk about sex, and to talk about being at higher risk for HIV infection means you have to talk about your sexual practice, or you have to talk about your drug use practices,” Payne said.
A participant in a study about PrEP conducted by the Oregon Health Authority said, “I guess I kind of felt like some people do: that if you get HIV, your life is basically over. It’s really messed up, it affects everything… I felt like [HIV] was something that these nasty people got, and I just wasn’t that person. Anyway, I thought that maybe I should [start taking PrEP].”
In 2020, Nine Circles and many other individuals and organizations came together and drafted a letter to Premier Heather Stefanson showing the community support behind PrEP. Through Nine Circles’ work and pressure from the community, in 2021, PrEP was added to the Manitoba Drug Benefits Formulary, which means PrEP is covered for Manitobans without private insurance as long they pay their pharmacare deductible.
Payne said the slow uptake on coverage for PrEP isn’t a surprise.
“I have been working in health for 22 years now… the notion of ‘as long as we’re not second last, we’re okay with that.’ I would love to see Manitoba strive to be a leader in these areas in a way that I don’t think I’ve ever seen before,” Payne said.
Now that PrEP is on the formulary, Nine Circles is making sure people at risk for HIV understand how impactful PrEP can be to their lives.
According to the CDC, a person is at risk for HIV if they are “sharing needles or having sex without a condom.”
Due to stereotypes and stigma, many may not be considering testing for HIV or using PrEP, Payne said. PrEP is available to everyone who is at risk for HIV, no matter their gender identity or sexual preference.
Payne said the majority of Manitobans who are contracting HIV are heterosexual and 50 per cent of those people identify as female, which is unusual. He said the government needs to do better communication around the issue in light of this reality.
The 2021 annual report on HIV/AIDS statistics from the Government of Manitoba stated that cases of HIV jumped from 116 in 2020 to 167 in 2021, a 44 per cent increase. Females with HIV also increased from three in 10 cases to half of all new cases.
Payne said he wanted to highlight the importance not only of PrEP but of being tested for HIV on a regular basis. Nine Circles conducts these tests by appointment. Most people don’t realize the importance of testing or what they should be getting tested for, said Payne.
The Nine Circles’ website states that people should be tested for sexually transmitted and blood-borne infections regularly, even if they don’t have any symptoms. Additionally, if they are at risk, they should be tested for HIV every five years.
Payne said he hopes convincing Manitobans to use PrEP and get tested will be a shorter struggle than getting PrEP on the formulary was.
Moving Things Forward
As Payne said, Manitoba often seems to be late on the uptake when it comes to coverage for medical advances. Payne said PrEP has been around for years and he saw how well it was working in other provinces. Karin knew about the pump because of DiabeticDanica and found out it was already available in other provinces and some states.
The province not moving to adopt a change until they are almost the last ones left to act on the issue is the same pattern Payne sees repeating in Manitoba.
There are many other groups advocating for great healthcare advances. There are also many other streams of related advocacy with equally important goals such as disability advocacy and mental health advocacy.
“[For] almost anyone who works in health, you will find that constant frustration. You know, as soon as we’re almost second last, we know what will happen, but it just seems crazy to be always waiting for that,” Payne said.
In the case of the pump and PrEP, storytelling was the clincher that pushed politicians and decision makers to make a policy change.
Luke’s story got Smith to take action. After a lot of effort to show the facts, Payne got results by getting those impacted to speak out and explain their own experience. If there isn’t a face connected to the facts, it’s hard to get the province to budge.
This is especially true when so many deserving groups are competing for funds and attention. According to the 2022 Manitoba budget, the province’s estimated expenditures on health for 2022/23 are already at just over seven billion dollars, which makes up 36 per cent of the total expenditure.
There are at least 142 social advocacy organizations in Manitoba. That number, of course, doesn’t include all the families and individuals fighting for change.
There are many factors when it comes to convincing someone of your cause. What Luke and Karin, along with Payne, show through their advocacy success is never to underestimate the power of peoples’ voices. A personal story from a kid or a community coming together might be what it takes to make a difference.
