Diabetes NZ social media campaign adds pressure to Te Pātaka Whaioranga – PHARMAC to fund life-saving equipment
Media release
On Tuesday 15 March, Diabetes NZ is calling on people with diabetes and allies nationwide to flood Facebook and Instagram with images and posts illustrating the burden of diabetes and the life-saving impact of modern technology.
Posts promoting the initiative have reached more than 50,000 people since early February, with many committing to supporting the campaign.
Diabetes NZ is urging the government to fund continuous glucose monitors (CGMs) and flash glucose monitors (FGM). These devices significantly change the lives of anyone dependent on insulin, including more than 25,000 children & adults living with type 1 diabetes and many more with type 2 diabetes.
Diabetes NZ CEO Heather Verry says, “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.”
CGM technology allows people with diabetes to measure their blood glucose levels continually to maintain ideal blood glucose levels and in turn prevent hospitalisations.
While anyone using a CGM describes the technology as life changing, costs start from $50 per week, which many can’t afford.
“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!”
The CGM attaches to the arm or stomach and gives an accurate blood glucose level in seconds through a digital sensor. Importantly, it also shows trends as to whether the blood glucose levels are dropping or rising, which helps avoid levels from going too high or low, and the consequences that come with this.
Blood glucose levels that are too low can be dangerous and result in coma, seizures, loss of consciousness and hospitalisation. Long-term effects of blood glucose levels that are too high can be fatal.
“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,” says Verry.
Verry says New Zealand is falling behind on funding drugs and devices for our national health crisis of diabetes.
Nearly 28,000 New Zealanders with type 1 diabetes and thousands more with type 2 are faced with the relentless, 24/7 struggle of glucose monitoring. With CGM and FGM their lives would be immeasurably easier.
The estimated annual cost of diabetes in NZ is $2.1 billion (0.67% GDP), which is projected to increase by 63% to $3.5 billion in 20 years. The majority of these costs come from treatment of complications from diabetes. Funding glucose monitors which help to manage diabetes before complications set in and will significantly reduce the cost of interventions further down the line.
Last month PHARMAC announced they are undertaking a review on CGM funding, following a recommendation by the PTAC Diabetes Subcommittee that the Dexcom G6 CGM system be listed on the Pharmaceutical Schedule with high priority. Diabetes NZ will continue pressure on PHARMAC until Dexcom and other CGM and FGM are funded in Aotearoa.
Diabetes NZ is urging all New Zealanders to support their petition for funding. To join the campaign follow us on social media, and share with hashtags #CGMforall and #FGMforall.
Real life effects
Du-Handré Blignaut: Type 1 child
(Written with support of parents; abridged)
I am five years old and was diagnosed with type 1 diabetes when I was two.
My pancreas doesn’t work, so I go high when I don't get enough insulin and I go low if I have too much. Going low scares me. I am so scared of dying.
I used to get finger pricks multiple times a day to check my blood glucose levels - more than I can count.
Since my parents got me a Continuous Glucose Monitor (CGM) it is a lot better because I can see when I am going low, and the sensor tells my insulin pump to stop my insulin supply. I can sleep through the night and not wake up to get a snack to treat the low. My parents also get a better night's sleep because the pump alerts them when I’m going low. Without the alert they have to wake up every hour in case I am going low and need assistance.
The CGM has changed my life. Not only does it mean I can live as a normal kid but it also saves my life every second of every day. Without it, I have ended up being as low as 1.6 without my parents knowing and I just fell to the ground trying to get a juice - I could have fallen asleep and never woken up again. Wearing the glucose monitor helps my mom, dad, teacher aide, family and me to manage my glucose levels.
I would love if this device can be funded for other people just like me so that they could also enjoy a life full of possibility and less worry. It is expensive and not everyone can afford it. My parents work, work and work to be able to purchase these for me. It makes life better for not just myself but for those looking after me.
Claudia Stuart: Type 1 adult
My name is Claudia, and I was diagnosed with type 1 diabetes in November 2001. I was six years old at the time, and in the hospital, started learning how to prick my finger and do my own injections with a syringe. Since then, a lot has improved in the way of technology!
I’ve definitely had my battles over the last 20 years, but the thing I’ve really struggled with is testing my blood sugars. I’ve gone weeks before without testing, because it takes time, it hurts, and everyone around you can see what you’re doing. I know how important it is to test regularly, but if I’m honest, I just hate it.
I’m currently pregnant with my second child, and I got offered a two-week free trial with a flash glucose monitor. From day one I was in love. It’s really helped combat my overnight lows, and I’ve now got my carb ratio perfect. The only thing putting me off the idea before this was the huge cost. I just couldn’t justify it. During pregnancy, blood sugars need to be monitored a lot more and insulin levels change frequently. I’ve decided to pay over $100 every two weeks for my growing baby’s health and to put it bluntly, a better chance at surviving.
Hopefully I can justify the cost after baby is born, but honestly I don’t think we can afford it.
Julie Hart: Type 2 retiree
I have type 2 diabetes, and I’m on Lantus (long-acting insulin) and Humalog (fast-acting insulin). I never used to do the finger pricks so I had no idea of my glucose readings. I used to rely on my quarterly HbA1c tests.
For some time now I have been using the FreeStyle Libre Sensor. It has changed the management of my diabetes phenomenally. My Hba1C has dropped significantly, though I still have a way to go. I take my monitor with me everywhere so I can check if I need some Humalog.
I am retired now so I am finding the cost of $100 a fortnight a bit of a stretch.
ENDS
For more information, or interviews, please contact: Frances Redpath, frances@diabetes.org.nz or 027 226 5525.
For a statement from Diabetes NZ, contact Diabetes NZ Chief Executive Heather Verry heather@diabetes.org.nz, 027 482 9422.
Note to Editors: Diabetes Stats and Figures – NZ
Most recent figures 2020.
· New Zealanders with diabetes: 277, 803
· New Zealander with type 1 diabetes: 27,800* (approx. based on 10% of all cases)
· New Zealanders with type 2 diabetes: 250,000* (approx. based on 90% of all cases)
*The figure is based on estimates by the Ministry of Health.
About Diabetes NZ
Diabetes New Zealand is a charity that represents and supports people with diabetes. We have been around for over 50 years and have a national office in Wellington, and branches across the country with staff and volunteers who help people live well with diabetes.
About type 1 diabetes
Type 1 diabetes is an autoimmune disease where the pancreas doesn’t make insulin or cannot make good use of the insulin that is produces. Without insulin, there is no way for the body to produce energy from glucose, resulting in increased glucose levels in the blood. This increase can lead to damage to the body and failure of vital organs and tissues.
There is no way to prevent type 1 diabetes. People can contract the disease at any age, when the immune system attacks and destroys the insulin-producing beta cells of the pancreas.
About type 2 diabetes
Type 2 diabetes is a condition whereby the pancreas either fails to produce insulin, or for the body fails to respond to insulin – a hormone that is needed to keep blood glucose at a healthy level. The condition develops over time, causing an increase in blood glucose levels in the blood. This damages parts of the body, including the nerves of the eyes and feet, kidneys and heart.
Evidence shows that while type 2 diabetes can initially be managed with diet and lifestyle, eventually the majority of those diagnosed will have to go on insulin.