Unfunded CGMs in New Zealand: The Price of Freedom for Lily


 

13-year-old Lily Barton has one precious memory before her diagnosis at four – eating ice cream with her gran at the movies.

It was before the pads on her little pinkie fingers turned to pumice from interminable finger pricks to try and keep up with her blood sugar levels. It was before she learned how squeamish all her friends were at the site of her blood – ‘ew that’s so gross don’t do that’ – and it was before she needed to cart a heavy diabetes kit with her everywhere, filled with all she needed to manually try to manage her luck-of-the-draw autoimmune condition.

Lily has been a dancer since she was small. Rehearsing and performing takes on a whole new layer of stress when it also includes trying to manually balance blood sugars as her young body responds to the exercise, the exertion, the stress and the energy required to perform at her best. Then there’s the little drops of blood on her beautiful white dress, tiny pieces of evidence of her relentless testing regime.

But not anymore or, at least, not right now. Since 2019, both a close friend and a family member have been helping to fund a Freestyle Libre CGM for Lily. It’s given her the kind of freedom and control over her Type 1 she never imagined was possible.

To a degree, it has also set mum Jess free too.

“A real bonus is being able to pair with it” says Jess. “ Lily has the app on her phone, so when she scans it pings on my phone when I’m at work. So whether she’s at school or a birthday party or even a sleepover, I can monitor her without bugging her every five minutes, wanting to know what her number is. I know she’s actually okay. It gives her that independence without me nagging her all the time”.

Jess loves a lot of other freedoms too, like not having to wake Lily during the night to test her when she unwell. She also values being able to spot trends early and adjust Lily’s insulin with more confidence.

There is no doubt in Jess’s mind that with continual use,  Lily’s CGM could play a substantial role in heading off the complications that can come with her disease – a blessing for the health system as well as for this family.

Their friend and family have committed to a generous two years of funding for Lily, a commitment of over $5000. When that runs out, does she go back to the hard labour of drawing her own blood half a dozen times a day?

“I really hope not” says Lily. “Mum and dad have been putting a little money aside for when it happens.  I’m going to college next year and I don’t want it to have to go back to finger pricking halfway through my first year. That would be super stressful”.

New Zealand has a national healthcare system that subsidizes cost of many diabetes supplies for the nation’s residents, but currently there is not funding for CGM use. Lack of funding in New Zealand means the CGM wasn’t even mentioned as an option by Lily’s medical care team. Instead Jess learned of the superior control and freedom  that was possible for her daughter via support groups on the internet.

“You hear stories about it from other people and you just hear how much better controlled their diabetes is and how much easier it is for the kids, and for the adults, too. Not necessarily just to do things discretely, but to test more often as well. You just want the best for them”.

There’s no promise for Lily that her two pinkie fingers won’t return to the texture of pumice next year. The CGM is funded in many other countries in the world but New Zealanders are left to find funds for their own freedom and the opportunity of better control.

“They one hundred percent should fund it. It makes everything in my life easier” concludes Lily.

WRITTEN BY Jill Brinsdon, POSTED 08/27/20, UPDATED 08/27/20

Based in Auckland New Zealand, Jill has been a passionate advocate for all things T1 since her second son Cody was diagnosed in 2003. Her drive on the Leadership Council is to connect more kiwis with the tools and community to help them live beyond. Beyond Type 1 works closely with Diabetes New Zealand to achieve this. In her spare time, she runs brand performance agency Tricky where she helps create brands that outshine the competition, improve cultural health and inspire a better customer experience.