Upper Hutt dad's plea to Pharmac to cover family's $5200 a year bill for 'life-changing' diabetes devices

A Kiwi teacher is calling for public funding for "life-changing" diabetes devices after being forced to stump up $200 a fortnight for basic care for him and his daughter.

Jared Summers is the Deputy Principal of Birchville School in Upper Hutt. He and his six-year-old daughter Sophie both have type 1 diabetes - an autoimmune condition which means the body doesn't create any insulin (or only very little amounts).

Summers spent most of his life managing his condition through finger prick blood sugar tests, but after Sophie was diagnosed as a toddler, he and his wife Rachel saved up to purchase a continuous glucose monitor (CGM). 

A CGM attaches to the arm or stomach and gives an accurate blood glucose level in seconds through a digital sensor. It also shows whether levels are dropping or rising, allowing users to prevent them going too high or low, which can have serious consequences.

The CGM has been life-changing for Summers and his daughter. But there's a catch: the device is not funded by the Government, and the basic version costs the family $200 a fortnight for both - an expense of $5200 each year. 

Summers says he's very fortunate to be able to afford it but Kiwis who can't finance the device themselves shouldn't miss out. 

"As a teacher, I am on the go all the time and now I can just wave my phone over my arm and see my blood sugars rather than taking 30 seconds to a minute out to do a blood sugar check on my finger," Summers told Newshub. 

For Sophie, the impacts have been even more pronounced. Not only has it allowed her the freedom to enjoy being a kid, it's also given Summers and his wife peace of mind at night. 

"When she was diagnosed we didn't have the CGM and she can't tell when she's going low. If I have a low in the night, I wake myself up - my body knows - whereas she doesn't know those signs yet. 

"We had to get up [every two hours] to check her blood sugars to make sure she was okay because it could be catastrophic if she has a low during the night and doesn't wake up. 

"But with the CGM, we still don't sleep as deeply as we used to, but it's lots more peace of mind that the machine will do what it's meant to do."

Blood glucose levels that are too low can be dangerous and result in coma, seizures, loss of consciousness and hospitalisation.

The long-term effects of high blood glucose levels are also hazardous and can be fatal, leading to complications such as kidney damage, eye damage, circulation issues and even heart disease or stroke.

Summers says the difference a CGM has made to Sophie's life is massive.

"She can have as close to a normal experience of being a kid as possible," he said.

"We still have to finger prick, because CGMs aren't 100 percent accurate all the time - but it gives us way better control and she doesn't have to have such close monitoring, she can just be a kid."

Sophie is also sleeping better without the regular night-time wake-ups, and games of hockey and tee ball are no longer unnecessarily interrupted.

"While she is waiting to bat, we can just scan her with the sensor and get her blood sugar level and see if it's stable or going low so we can stop the low happening so she doesn't have to stop playing," Summers said.

"[Instead] she can just have some food and keep playing rather than having to stop and sit out for half an hour because her blood sugars have gotten too low."

Jared and Sophie Summers
Jared and Sophie Summers Photo credit: Supplied

'Pharmac sees it as a luxury'

Summers and his daughter use the Libre CGm, which is a basic device. A more advanced CGM, made by Dexcom, costs nearly $400 a month per person, making it completely unaffordable to them. 

"The basic one is like bare bones but it does the job, but [even] that is way out of reach in today's climate - it's [perceived as] a luxury rather than a must-have. We see it as a necessity but Pharmac sees it as a luxury."

Summers would love to be able to get that Dexcom, even just for Sophie, but the cost is too prohibitive. 

"It's definitely frustrating that we can't afford the Dexcom - just even for Sophie so it's another barrier out of the way - but unfortunately we can't. 

"But the basic works, so even if the basic one was funded that would be amazing - it would free up $200 a fortnight for us which is a lot. It would make a huge difference for any diabetic."

Summers believes making CGMs available to everyone would also help people with diabetes manage their disease better, and could stop them developing other issues later in life. 

"It's the ambulance at the top of the cliff, rather than at the bottom," he explained.

"With diabetes, it's a disease where you don't see the effects until later on in life, so if you don't have good control when you're younger, then you could have your eyesight deteriorate, problems with your circulation and things like that later on in life."  

Summers said even if the devices were only publicly funded for kids and teenagers, it would make a huge difference. 

"We are fortunate that we can afford it, but there are so many that can't.

"That's just horrendous, because if these aren't available, [diabetics] don't have control over trends, or they have to wake up and check their blood sugar - and all these things would stop if they were funded."

Summers says he feels let down by New Zealand's system - especially after living in Australia for several years where the Dexcom is fully funded for people under 21 and some older Australians.  

"I've got friends over there who are on the Dexcom which is funded. So their control is better and there is less stressing out because they don't have to fund it themselves, whereas we have got to find that money ourselves."

Diabetes New Zealand is campaigning for public funding of CGMs and FGMs (flash glucose monitors) for everyone in Aoteroa who needs them. 

The organisation's CEO Heather Verry says the devices significantly change the lives of anyone dependent on insulin, including more than 25,000 children  and adults living with type 1 diabetes and many more with type 2 diabetes.

"It's about time the Government took the needs of the diabetes community seriously. We need action now to give people with diabetes the support they deserve.

"Because CGMs aren't funded, many New Zealanders, including children, living with diabetes will never experience the life-changing, life-saving benefits - and that's not good enough!

"This equipment shouldn't be treated as a luxury. The technology to live a normal, healthy life is there, but Kiwis aren’t given access to it."

Pharmac responds

Pharmac’s director of operations Lisa Williams told Newshub two CGMs are currently on its list of items it would like to fund. 

Williams said Pharmac evaluated three finding applications for CGMs which were the Freestyle Libre Flash glucose monitoring system, G6 continuous glucose monitoring (Dexcom) and Medtronic continuous glucose monitoring systems - Guardian 3 and Guardian Connect (Guardian). 

The Freestyle Libre Flash and Dexcom CGMs were reviewed by the Diabetes Advisory Committee and recommended for funding. They are currently on its list of medications it would like to fund. 

The Medtronic CGM was reviewed by the Diabetes Advisory Committee in late September 2021 and was recommended for decline due to newer products like the Libra and Dexcom offering greater functionality. 

William said Pharmac funds several other devices which help Kiwis manage their diabetes. 

"We fund four different blood glucose testing meters, including a dual meter that measures both blood glucose and ketones. We also fund insulin pumps for people who meet certain clinical criteria.

"We understand and can appreciate that consumers, clinicians, and patient advocacy groups have high expectations about having timely access to new medicines and devices. We fund around 1300 different medicines which are used in hospitals or are available from your local pharmacy."

Williams said Phamarc has funded six new medicines this year and widened access to another 12 (not including COVID treatments). 

"Often, when talking about an unfunded product, people say that Pharmac has decided not to fund it. But that’s not true; most of the time what is happening is that we are focusing our attention (and available funding) on other new treatments. We’ll always have medicines and devices that we’d want to fund when/if we have more money available."

For the Summers family, funding would make a huge difference freeing up $400 a month at a time when the cost of living is already skyrocketing.