Managing Type 1 Diabetes in New Zealand
My life as a person with diabetes began about 13 years ago at the age of 32 when I was diagnosed with adult onset type 1 diabetes. Initially, I was misdiagnosed with type 2. The most frustrating thing in the whole phase was being told to eat better (when I eat healthily anyway). That’s what had me in tears—not my diagnosis of type 1.
My sister was also diagnosed with type 1 diabetes about seven years prior in her early 20s—so there was a family history. Thankfully, I have some medical knowledge and requested antibody tests. They came back positive.
As I was planning a pregnancy, I was referred to Auckland Hospital’s diabetic midwife team not long after my diagnosis. What a blessing that was! The tight control (required during pregnancy to minimize effects on the fetus) and expert advice from the team set me on the right path for managing my diabetes.
After a number of early stage miscarriages, I delivered a healthy baby girl in April 2009. She has her antibodies screened, together with my niece and nephew, every year as part of the global study, TrialNet, at the Liggins Institute in Auckland. It happens close to Christmas and in the previous few years, we’ve all gone and seen Santa afterwards. They look forward to having their blood taken every year!
Fast forward a few years and I’m now experiencing ups and downs in blood glucose levels across the month. It’s likely due to “hormonal changes”. For the first half of the month, I’m on a lower dose of Lantus (12-14 units/day) but in the latter half of the month, it increases to around 20 units/day. But as I don’t know when these changes are going to happen—and they do vary—some days I spend ‘eating up’ and other days are spent ‘dosing up’ with insulin.
I’m pondering the investment in a Dexcom G5. Will the investment help with this? Initial costs are around NZ $2000 with ongoing costs of NZ $500/month (monthly sensors) and $750 every three months (new transmitter). That’s over NZ $10,000 per year or $190/week (costs as at March 2016). These costs will have to be paid for privately. Health insurance companies in New Zealand are unlikely to cover these costs. Bizarrely, they cover funded medicines which means their cost for medicine coverage are only ever a maximum of $100 per person, per year.
Like some expensive medicines and devices in New Zealand, it’s unlikely that continuous glucose monitor (CGM) will ever be funded by Pharmac in New Zealand. Pharmac is New Zealand’s state funder of medicines. They’ve done a great job at curbing the expenditure of our drugs budget—but new and innovative (also read more expensive) medicines and devices aren’t likely to be top of their priority list. Like any economic model, the “economic costs” of being able to buy more for less don’t apply to small disease groups like type 1 diabetes —and not many type 2 diabetes require a CGM.
Pharmac’s funding of medicines and devices usually operates in two ways—drive down prices of older medicines to get a newer medicine funded or provide the supplier with a “sole supplier environment”, which tips the scales to favor bulk-delivery and greater market share to the supplier and lower costs to Pharmac. And there’s limited or no patient choice.
For example, a tender in 2012 resulted in only one brand of blood glucose meter (Caresens) and its respective strips being funded. However, this did result in savings of $10 million dollars/year—which was used to fund other medicines (and devices like insulin pumps and consumables). Three years later, this tender process for a blood glucose meter has begun again.
As I mentioned above, in robbing Peter to pay Paul, many people with diabetes were finally able to get a funded insulin pump and consumables (two brands are now funded). Prior to this, private payment, support from charities and some provided by the hospital system were the only options. But to receive a funded option, you do have to jump many hoops—recurrent hypoglycemic episodes, sub-optimal control resulting in a high HbA1c, or children (Pharmac Special Authority Criteria—Insulin Pumps). Consumables are funded too—if you meet the Pharmac criteria.
Lantus (insulin glargine) is currently the only long-acting insulin analog fully subsidised by Pharmac. Proposals are being considered for the supply of biosimilar insulin glargine. Levemir (insulin detemir) remains unfunded because Pharmac and the supplier can’t agree on a price. Most rapid and intermediate acting insulins are funded (Apidra, Novorapid, Actrapid and Humalog; Mixtard, Humulin and Protaphane) without any special access criteria.
Costs for health treatment in New Zealand are mostly state-funded and here is a break down.
- A visit to a community doctor (general practitioner or GP) usually costs about $50 if you are earning, less if you are in a lower socio-economic area or on state support.
- Three months’ supply of a funded medicine like insulin generally costs about $5 an item due to the state subsidy.
- The maximum prescription costs are $100 per year (20 items).
- Costs for private visits to a diabetes specialist are around $200—although again, the state provides free access to a diabetes specialist, nurse and dietitian once a year (and maybe more often if control is poorer).
It would be great to see more flexibility and individualism applied to health funding in New Zealand. I don’t need a pump and all the consumables as I control my blood glucose well, but I’m sure I’d benefit from a CGM so I can understand what my bloods are doing and therefore maintain better control! But like many unfunded medicines—there is a gap in the system. No state funding, no private healthcare coverage, so pay for it yourself.
In a similar vein, as a person with type 1 diabetes, it would be great to have communications that encompass your disease—not ignore it—or pass it off as similar to type 2. On the Pharmac website, the diabetes section mixes up the messages for type 1 diabetes with its focus on type 2 diabetes. For example, there is a section titled “Insulin and Type 2 diabetes”—but not for type 1—go figure! Type 1 gets a mention as part of type 2: “Everyone with type 1 diabetes takes insulin”. Another section, “Who can get diabetes” doesn’t even mention anything about type 1. No wonder people don’t understand the differences between the two diseases if our health system can’t communicate such important information.