Two 11-year-old girls have made a video begging Pharmac to continue funding the insulin pumps they rely on to keep them alive.
Emily and Zoe have type 1 diabetes and use Medtronic pumps that work to monitor and control their blood sugar levels continuously.
“New Zealand, we need your help desperately”, the girls said in their video.
“The pumps, they’re basically like a body part we don’t have,” Emily said.
They begged Pharmac not to take the pumps away from them.
“If we don’t have this, and we get put on another technology, there’s a potential we could die. We could die without these,” Emily said.
The pair want Kiwis to sign a petition asking Pharmac to reconsider a proposal to defund their pumps. The petition already has nearly 7000 signatures.
The Medtronic system has the most advanced algorithms used in 150 countries, crucial for managing blood glucose levels and ensuring the well-being and peace of mind of individuals, the petition said.
Pharmac does not currently fund continuous glucose monitors (CGMs) but has funded the Medtronic brand of insulin pumps and consumables.
It is now consulting on a proposal to fund CGMs, insulin pumps, and insulin pump consumables.
If approved, the 18,000 people with type 1 diabetes in New Zealand would be eligible for funded access to CGMs.
This would address a significant unmet need and secure a long-term supply of monitors and pumps within Pharmac’s fixed budget.
No one is disputing this would be life-changing for many, however, as a result, Pharmac would stop funding Emily and Zoe’s Medtronic pumps. They would have to switch to one of the funded brands or pay privately.
Pharmac Pharmaceuticals acting director Adrienne Martin said this “brand change” would affect about 1500 people.
“We understand that changing brands may be difficult.
“We have proposed a 12-month transition period to ensure that there is sufficient time and resource to support this change and allow people to consider which of the funded options are right for them.”
This timeframe was based on clinical advice that some people may be able to transition quickly while others may find it more difficult, Martin said.
“To reduce the impact on people who may not be able to switch brands due to clinical reasons our proposal allows up to 10 per cent of people to access a different product through Pharmac’s exceptional circumstances pathway.”
Mel Swallow, Emily’s mum, acknowledged the proposal was a monumental shift for the type 1 diabetes community.
“I’m not critical of that, I’m just saying they haven’t got it right.”
Swallow disputed it was simply a brand change because of how specialised each pump was.
“It’s not a Ford versus Holden type argument. The algorithms work quite differently and I think that message has got lost.”
Swallow wanted the option of continuing with Medtronic even if that meant it was only partially subsidised and users paid the balance.
“It’s changed our lives and we sleep, our child sleeps, her learning’s improved because she’s not having interruption at school.
“The quality of the data that parents can see while your child is away from you just makes that management on a day-to-day basis so much easier.”
Claire Frazerhurst, Zoe’s mum, worried another pump would not do the job as successfully.
“I don’t know if these other pumps will work for her or not and secondly, I worry about starting again where a new pump and new sensor have to learn Zoe’s body.
“It just worries me that we’re going to go backwards.”
She was also concerned about the waste involved with decommissioning the pumps already being used.
Frazerhurst said diabetics should have a choice of pumps that work differently so they can pick the one that works best for them.
“Overall, that then gives the diabetes community the best results and the whole point of funding is to get better outcomes for diabetics. So, give them the tools to get the better outcomes.”
Consultation on Pharmac’s proposal closes at 4pm on April 26 and feedback can be emailed to consult@pharmac.govt.nz.
Georgina Campbell is a Wellington-based reporter who has a particular interest in local government, transport, and seismic issues. She joined the Herald in 2019 after working as a broadcast journalist.
The 36-year-old died on December 19.