Josh McMillan has been a member of Ngā reo māhuri | Young voices consumer advisory group since 2023. He is a passionate advocate for young people and has been actively involved with Canteen Aotearoa since 2022 as a patient, sibling member and now Board Chair.
We interviewed Josh to learn more about his journey as a consumer, becoming a leader and his commitment to improving outcomes for rangatahi.
Introducing Josh, his health journey and lived experience
Josh’s journey with cancer began not with his own diagnosis, but his older sister’s when he was just four years old. At age nine he was diagnosed with leukaemia, the first known case of two siblings having the same form of Leukaemia. While his sister managed treatment relatively smoothly, Josh faced years of complications, hospital visits and side effects that made his experience especially tough.
Being a young person with cancer meant growing up quickly. "It was a big weight on my shoulders" he says. The treatment disrupted school, sports, and social life. Josh recalls the bullying, the pressure to appear “normal” and the long-term health effects, including over a dozen diagnoses and major surgery to address years of undiagnosed complications.
But some of the hardest parts came after treatment ended; “cancer doesn’t stop when the treatment stops” he explains. Like many young survivors, Josh faced mental health struggles, including anxiety and depression that came to a head in early adulthood. "I woke up every day for years with the very tangible thought of, ‘I might die today’...that takes a toll.”
Today, Josh channels his lived experience into meaningful work through Canteen Aotearoa where he advocates for young people navigating life during and after cancer. He’s passionate about shining a light on survivorship challenges and making sure young voices are heard. His story is one of resilience, humour and heart; and a powerful reminder that support for young people with cancer must go well beyond treatment.
Why advocacy for young people and their whānau is so important
Josh never set out to be an advocate, he “stumbled into it” through sharing his lived experience and deep connection to Canteen Aotearoa. Having first joined the organisation as a teenager after his leukaemia diagnosis, Canteen gave him space to just be a young person again; "to unwrap the bubble wrap" placed around him by doctors and parents. It was a place for fun, connection, and escape.
Years later, after facing mental health struggles and coming back to Canteen for support, Josh found a different kind of outlet, psychosocial support and conversations that helped him process who he was after cancer. Through reconnecting with other young people and joining the leadership programme, Josh saw the power of peer connection and the gaps in how the system listens to young survivors.
"I realised if no one stepped up and told professionals how it really is, nothing would change" he says, "young people often don’t feel like their voice matters, but without that voice, you’ll never truly hit the mark on what we need."
Now, Josh is committed to making sure young people and their whānau are heard. "You can't ask a 40-year-old to solve an 18-year-old’s problem and expect it to land. Generations change, so the voices in the room need to change too."
The influence of working with communities experiencing inequity
Working alongside communities who experience inequity has shaped Josh’s understanding of what equity truly means. Grounded in both academic theory and lived experience, he’s come to see that equity isn’t always about material disadvantage, it’s about recognising the different struggles people carry.
“I’ve never gone without food or shelter, but I had to fight to stay alive. People might look at me and assume I’ve never had a problem, but they don’t see the full story” he shares. His work through Canteen, as well as global youth cancer networks, has deepened his awareness of how diverse and complex inequity can be, from access to cancer care in the United States, to the assumptions made in his own backyard.
A lesson that’s stuck with him? “Everyone’s carrying their own bag of garbage. If we all put it in a pile and could choose someone else’s to carry, most of us would still take back our own because we know how to manage our own challenges.”
Josh believes that truly understanding inequity starts with listening and dropping assumptions because no one’s experience fits neatly into a box.
Feeling supported, seen and heard as a young person in the health system
For Josh, feeling supported and heard in the health system came down to the people who went above and beyond. One of those was a paediatric outreach nurse from Rotorua, nicknamed “Mum #2” in his phone, who cared for both him and his sister during treatment.
“She’s part of the family now” he says. “She would do anything for us, bring me hash browns when I wouldn’t eat, challenge doctors if she thought something wasn’t right. She always had my back.”
Josh also credits a dedicated oncologist who kept him under her care well past the usual timeframe, refusing to discharge him until she was confident, he was getting the care he needed.
“It felt like luck of the draw sometimes,” he reflects, “but when you find those people who genuinely care and who ask you what you need instead of just going by the book, that’s what makes you feel seen and supported.” Allowing space for whānau to be present also made a difference. “Even when I didn’t want them there, having my family allowed in the room meant a lot.”
A change Josh would like to see for young people going through tough health journeys
One change Josh hopes to see in the health system is more transparency, inclusion, and plain-language communication for young people navigating tough health journeys.
“When I was going through treatment, everything was so focused on just getting me better,” he says, “but no one really talked to me about the long-term outcomes.” He recalls moments of wishing he had been included in earlier key decisions that have contributed to numerous past and ongoing long-term conditions.
“I wish someone had said to me, not just my parents or family ‘here are the risks of this approach, here’s another option, and here’s how we’ll support you with whatever comes next.’”
For Josh, it’s not about having full control, he understands that some treatments are essential or mandated. About being spoken to with honesty, clarity, and respect he says, “don’t just use medical jargon like everyday people don’t understand this nor do they need to. Explain it in simple accessible terms THEN make sure they understand what they’ve been told.”
“Patients/people shouldn’t have to learn and consult a complex medical dictionary to try and understand. I think about it more as a health literacy perspective. I’m quite health literate and know how to research properly if I don’t understand - not everyone else can do this.”
“I’ve always known what thrombocytopaenia was cause I learnt it; was relevant for me to know and I’m interested enough to research.”
On behalf of Te Tāhu Hauora Health Quality & Safety Commission and Te Pūkāea Matatika Māori Health and Consumer team, Hariata and Penita, thank Josh for generously sharing his time, story, and lived experience. Josh’s reflections on Canteen, and the journey he and his whānau have travelled through cancer, hold immense weight and meaning. It’s not just the challenges he’s faced, but the way he turned those experiences into purpose and provided a platform to uplift, educate, and support within the health sector.
We are proud to share the link below to a recent case study highlighting Josh’s contribution to Ngā Reo Māhuri – Young Voices Advisory Group earlier in July.