Twelve-year-old Kaitaia Intermediate School student Janae Cochrane knows that she will have Type 1 diabetes for the rest of the life, unless the time comes when she needs, and receives, a kidney (and pancreas) transplant.
In the meantime she has grown accustomed to the routine of constantly testing her blood sugar levels, injecting insulin when it is needed, and maintaining strict control over her diet. But keeping the illness at bay is coming at a significant cost.
Janae wears a continuous glucose monitor (CGM) on her left arm, which she can read with her phone, via an app that tells her what her blood sugar level is. The other option is finger-prick blood tests 12 or 15 times a day, a process that is irksome and unpleasant.
The problem with the sensor, however, is that it costs $105, and has a life of just two weeks.
"We're pretty lucky in terms of what we don't have to pay for, but $105 a fortnight is a bit much," Janae's mother Susan Cochrane said last week.
The big hope was that a petition launched by Marsha Mackie, mother of a diabetic child, would succeed in extending the current subsidies on medication and equipment.
The petition, which last week had almost 20,000 signatures (and closes in a couple of weeks), asks the House of Representatives to urge Pharmac to fund continuous glucose monitors, GLP1 agonists including Bydureon, Byetta, Lyxumia, and Victoza, SGLT2 inhibitors including Forxiga and Jardiance, and DPP-4 inhibitors including Januvia, Onglyza, and Trajenta.
The petition says CGMs can prevent severe hypoglycaemia, causing hospital admissions and long-term diabetes complications, while international evidence and guidelines showed new classes of medication offered the best health outcomes. CGMs were funded in the UK, while Bydureon (was publicly funded in 30 countries), Byetta in 33, Lyxumia in 49, Victoza in 53, Forxiga in 38, Jardiance in 49, Januvia more than 80, Onglyza in 41 and Trajenta 52.
The petition can be found at www.parliament.nz/en/pb/petitions/document/PET-89947/petition-of-marsha-mackie-for-diabetes-new-zealand-diabetes
Janae was diagnosed with Type 1 diabetes in September last year, after suffering symptoms including excessive thirst, constant need for the toilet, eating more than usual but not feeling full and losing weight. Those symptoms have eased, but she now needs to self-inject three types insulin four times a day, and accepts that will be her lot for life.
Mrs Cochrane said the family planned to investigate buying an insulin pump at some stage, at a one-off cost of around $8000. Pharmac would provide pumps in some circumstances, but there were very tight criteria, she said, and, having qualified, patients had to remain within the criteria to keep them.
Meanwhile the CGMs could only be bought online, albeit from within New Zealand, and the cost buying a new one every two weeks was becoming prohibitive.
Janae said the finger-prick test wasn't "much fun," and the sensor made regular testing much easier, but the change in her life, and those of her family, had been significant, and remained so.
Mrs Cochrane said she had been calling at the school twice a day to check Janae's sugar level, but that was now done by a teacher aide. Her daughter had to be with someone at all times — "Where I go she goes" — however, and often had to be woken at night to be fed to adjust her sugar level.
Janae's problems included that Type 1 diabetes was still confused by some people with lifestyle-related Type 2.
"They think I've got it because of what I'm eating," she said. "They don't understand that it has nothing to do with me."
"It's a tough life for Janae. It's tough for all of us," Mrs Cochrane added, "but if Pharmac covered the cost of the monitors that would make it just a little bit easier."