Basketball star Steven Adams and singer Anika Moa are backing a Tauranga teenager’s campaign after he petitioned the government to fund lifesaving equipment for New Zealanders with type 1 diabetes.
Posting a photo of his nephew Kepaleli, the NBA player urged people to sign the petition to fund lifesaving monitoring equipment.
The petition, set up by 16-year-old Toby Good, aims to secure Continuous Glucose Monitoring (CGM) technology for the 26,000 children and adults living with type 1 diabetes in Aotearoa.
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Adam’s nephew Kepaleli, the son of his Olympian sister Dame Valerie Adams, was diagnosed with type 1 diabetes in 2020. Adams has spoken about how the CGM device helped their family.
“When we came home, it felt like we had a newborn baby – that same sense of nervousness and paranoia,” he said. “We were up every hour pricking his finger, it was awful.
“A couple of months down the line, we discovered a device we could attach to Kepaleli, letting us get his blood glucose readings on our phones just so we’re not constantly causing him pain. We’re now close to two years in, and we’ve become more relaxed about Kepaleli’s condition.”
Singer Anika Moa also urged people to sign the petition after explaining how it had helped her battle the condition.
“My life completely changed on the day I was diagnosed with type 1 diabetes,” said Moa. “My symptoms were so obvious but not to me, who didn’t even understand what kind of f****d up autoimmune disease I had.
“With the help of my CGM monitor/Dexcom 6 and the diabetes specialists, it has helped me wake up (most) days happy, healthy and feeling loads better than a year ago.
“So please, please, please – if you have time today, sign this petition to get CGM’s funded. It literally saves lives. I want all our kids in Aotearoa to be able to get these free.”
Toby Good, who has type 1 diabetes himself, said CGM devices saved lives by warning users when blood glucose levels were dangerously high or low.
“They reduce the burden on individuals, families, and the health system and improve overall health outcomes,” said Good.
Despite being funded in many countries, including Australia, Canada and the UK, Pharmac does not currently fund the monitor.
“Costs of the device make it unaffordable for many families,” said Good. “People care about this. I never asked for type 1 diabetes. The condition has no known cause or cure. What I do know is that the CGM has saved my life, several times.”
Good said thousands of New Zealanders had already signed the petition.
”It’s great that Steven Adams, Val Adams and Anika Moa have backed our cause,” he said. “We can’t wait any longer. Lives are at risk. It’s not fair.”
Good’s mother, Lavina Good, said that while she was able to pay for the device for her son, many people were missing out.
”Pharmac just needs to read the comments on Toby’s petition,” she said. “They say it all. One mother said its insane she has to find $389.50 a month to give her son a chance.
“Many families just can’t do that. This is an incurable, life-threatening disease with reasonable outcomes only for those with resources. It is morally wrong.”
Diabetes New Zealand have previously said Pharmac needed to “stop procrastinating” over funding of the monitors.
Pharmac’s director of operations, Lisa Williams, said there were two CGMs on their options for investment list that it was considering funding.
“We are also reviewing our approach to the assessment of diabetes technologies, ensuring we are considering emerging evidence and applying this consistently across all currently open funding applications,” said Williams.
“Unlike other countries, Pharmac works within a fixed budget, which means that we need to make difficult choices about which items to fund within the available budget.
“To achieve the best health outcomes, we have to prioritise our decisions. This prioritisation is dynamic, and we must take the time to consider various ways in which funding (or not funding) a medicine would impact New Zealanders.
“Because of this, we cannot provide a definitive timeframe for if or when medicines will be funded – something we know can be difficult to hear.”
In May 2022 the government announced a $191 million budget increase for Pharmac over 2022/23 and 2023/24 to spend on pharmaceuticals.
“We are currently working our way through our options for investment list, negotiating agreements with suppliers,” said Williams.
“So far this year (July 1, 2022 – June 30, 2023), Pharmac has funded 12 new treatments and widened access to 17 medicines, and we hope to fund many more treatments over the coming 12-to-24 months.”
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