Prize-winning scientists have saved 450 lives
Maybelle McLeod is so familiar with Professor Parry Guilford that she calls him her “brother from another mother”.
“And she’s my sister from another mister,” Guilford says.
It’s now almost 30 years sine a 28-year-old Maybelle McLeod picked up the phone and rang Guilford’s predecessor at the University of Otago’s genetics department.
Three people in her whānau had died of stomach cancer that year, including her 28-year-old cousin. She knew something wasn’t right and she wanted cancer geneticist Professor Tony Reeve to tell her why.
“I was just asking him if he would help us. That’s as far as my thinking went,” McLeod (Ngāi Te Rangi, Morehu) said. “The whole time I was thinking, ‘am I doing the right thing?’ ”
Some members of the whānau had believed a curse was behind their early deaths, so McLeod had to convince them to provide blood and tissue samples, including from those who had died.
Twenty-nine years and 53 research papers later, the research born out of that phone call has saved an estimated 450 lives in New
Zealand and 27,000 internationally.
One of those lives is singer Stan Walker, who had his stomach removed in 2017 due to cancer which otherwise would have killed him at 27. Walker is the grandson of McLeod’s cousin.
Yesterday, the research team accepted Te Pūiaki Putaiao Matua a Te Pirimia, the Prime Minister’s Science Prize, in recognition of their decades-long work.
Early in their research, Reeve, Guilford and the Otago team identified a mutation in an inherited gene called CDH1. Those who carried it had up to a 70% chance of developing advanced stomach cancer, and the McLeods were not the only ones.
Associate Professor Karyn Paringatai (Ngāti Porou) who is unrelated to the McLeods, had her stomach removed in 2010 after learning she had the mutation. In 2015 she gave a TEDx talk titled, My whakapapa saved my life.
There are about 20 known whānau, both Māori and Pākehā in New Zealand who have the mutation.
The $500,000 research money will go towards efforts to find others, Guilford said.
“We think there are a lot of families out there we haven't found yet, both Pākehā and Māori families, because they're not so obvious. The big families stick out ... the smaller families, you don't know about until there's a tragedy.”
The McLeods now had such a system that when a family member reached the age of 14, they were offered a counselling session, then a blood test, said Erin Gardiner, clinical coordinator at the McLeod’s Kimihauora Health and Research Clinic in Tauranga. “Our kids know they will have to have the test. They’ve watched grandpa die or nana or aunty be sick.”
If they’re positive, they go onto a surveillance programme which is an annual endoscopy until they wish to have their stomach removed. That is the only remedy, Gardiner said. “They might want to wait till after their 21st or something to have their puku out, but there’s time, if they have the scopes done on a regular basis.”