Interviewed by Sanya Grover
Hailey Cheema has been an organ advocate in Surrey, BC since 2012. Her efforts in pioneering youth stakeholder advocacy has led her to be appointed as the National Youth Governance Delegate for The Kidney Foundation of Canada. She is the younger in the organization’s 55 years to have been appointed to sit on the board. She graduated in 2019 from Simon Fraser University (SFU) with her BSc in Health Sciences with Co-Op Education Designation.
- How did you get involved in organ advocacy?
I have been involved with the Kidney Foundation (BC and Yukon Branch) and BC Transplant Society for the past seven years in terms of organ donation advocacy and creating awareness. My journey started in 2012. It came to my attention that there was a Kidney Foundation and that they were advocating for awareness on kidney disease. This really caught my attention, as my grandfather passed away from kidney disease when I was in grade 9. I think it was really important for me to understand what organ donation was, and I actually didn’t even know what it was until I was about 15 years old and started to get involved. I initially started fundraising between 2012 to 2014. Over the 3 years that I was involved, I raised over $15,000 for the BC Kidney Walk. After that, I wanted to take on a bigger role in the Kidney Foundation. I was the youngest recipient who won the 2014 BC Kidney Youth Leadership Award.
I then started getting even more involved with the Kidney Foundation. I had no idea how sick people could be. For example, I met a patient in 2012 who I have known up to now. She was very sick early on in her late teens, had to go through dialysis, and was experiencing transplant issues due to her blood type. She finally got her transplant through an exchange program. She was then able to get back to school, and actually had her baby just a while ago. You can see how unhealthy and sick people look and how that turns over just with a transplant. I’ve seen things like that but I’ve also seen kids who are super young, around 3-4 years old, experiencing issues with their kidneys. Their parents have to watch their kidneys fail, until they go on dialysis, and then are able to get on the transplant list, as only when you are registered on dialysis are you able to get on the list. Its scenarios like these two that really brought me to organ advocacy. I wasn’t aware, especially when I was younger, as I had a mindset where organ donation was only needed in cases of trauma, such as when someone has a car accident. I had no idea that people needed them and how long you had to wait. Additionally, it doesn’t seem like society talks about it as much as cancer and how its affecting people. Because there wasn’t a societal conversation about it, I just felt that I never knew enough and had to go out and educate myself.
In 2014, there was actually a community conversation that was held between 15-20 cities. When it was held in the City of Surrey, we invited local nephrologists, local transplant patients, and society members to come and we wanted to work on stimulating more conversation about organ donation in the city. When we talked about the challenges, a lot of them that came up were misconceptions, the age, as well as sensitivity in talking about death. For me, this sensitivity aspect was not even apparent because I have been talking about donation for so long, but I learned a lot about others and how this could be a challenge for them.
In 2015, the report was compiled with all these locations and they wanted to actually go to the Parliament Hill in Victoria, BC and talk to local [Members of the Legislative Assembly (MLAs)] about adding organ donation to their political platform. I actually got sent to Victoria and met with Judy Darcy who is the re-elected MLA of New Westminster, but also the Minister of Mental Health. She had a really good response to my story and the conversation continued even after my trip to Victoria.
- How did you get into your project of implementing organ donation into the education?
I thought about it, in the midst of everything, how we were asking these politicians to add organ donation to their political platform. When I reflected, I realized that that doesn’t really address the fact that we don’t talk about it enough. It’s not really on these MLA’s to push something that’s very controversial. What we should be focusing on more is education and public awareness. For example, the Kidney Foundation is really trying to raise awareness through their South Asian chapter in temples, but have really been experiencing a lot of resistance to it. They are finding that many people, especially those that are older, have a very strong resistance to it. I would love to say that if you add it onto a political platform, it would help as you have these stakeholders in our community pushing this and that maybe people would be inspired to register. However, that doesn’t erase the fact that there are a lot of people like me that before I got involved, just simply do not know the importance of organ donation. They don’t know what it means to people who need a transplant. It’s not the public’s responsibility, but rather the community leaders’ responsibility, such as myself, the Kidney Foundation, and BC Transplant that need to converse with the community and start the message. They need to talk to people about it and address people’s concerns because we need to be mindful that the population doesn’t really talk about it. If we’re educated, we’re doing a disservice by not talking about it or not spreading the word. So, I took all of that: the importance of how we need to talk about it more, the challenges with some people’s fixed mindset, and moved forward.
In 2017, I started a petition to implement organ donation into the curriculum. At that point, I had no idea what I was going into. I kept pushing and pushing to get more signatures. Within 5 hours it had 100 signatures, and 14 days later, the list hit 550. This resulted in a call from Global TV’s Aaron McArthur who wanted to do a story about my initiative, which led to an invitation from the Canadian National Transplant Research Program in Ontario to become a research partner. I also stumbled upon an honorary Surrey City Councillor Mary Martin, who was an avid donation advocate. She was very passionate about the idea of implementing organ donation into education and helped me present to the City of Surrey. The room was full of a diverse range of people, including doctors, community leaders, education professionals.
- What are some of the challenges in raising awareness?
The problem stems from not having enough open conversation about it. If in our late 20’s we decide to sign up as organ donors, but in the future, if our parents or next of kin decide to revoke that decision when the situation arises, they are allowed to do that. That’s why we need to have open conversations at home and the people that start these conversations are people like advocates, like you and I. Having those conversations when we are young now is what is going to propel us to have these conversations in the next 20-30 years, and be able to say then, openly: let’s talk about organ donation. That’s why education and public awareness are more effective than even adding it to the political agenda. Donation requires consent and when it is brought up in the agenda, it may almost feel that people are getting their autonomy restricted.
- What are you currently working on?
Right now, I am working with the City Councillor to try to launch a pilot project in Surrey. There are a couple of nephrologists in Vancouver that are very well known, as well as the Kidney Foundation that have put together a professional research project/report to measure the success of the education.
I actually told the Kidney Foundation to have a similar approach to donation as we did with Terry Fox. Logan Boulet who registered as an organ donor when he was 21 and passed away in the Humboldt Broncos bus crash. Six people across the country benefited from his donation and as a result, nearly 100,000 more Canadians signed up to become organ donors after learning about his legacy. I think in many ways, Boulet’s heroism is similar to that of Terry Fox: his passion and his story should be carried on.
- What have you learned through your advocacy?
I have learned a lot about how to work with people and how to talk to them. I think I also have to accept and understand that a lot of people just don’t know what organ donation is and what the importance of it is. It’s definitely not a “fix everything tomorrow” issue, but rather something that will improve within 10, or 15 years if we choose to have those conversations now and take those important stepping stones. It’s so important to actually address people’s concerns and have a conversation, rather than just persuading them to sign a card. It’s really knowing what the importance of signing that card is.
Hailey’s advocacy journey shines light on the importance of implementing organ donation awareness within the youth to spark conversations around this critical issue, whether it be at school or at the dinner table. Though raising awareness does come with some challenges, Hailey’s experiences provide insight into the tremendous impact a donor can have on one’s life — a gift like no other.