What having T1D is like in New Zealand

Type 1 and LADA
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Hi all,

I don’t think I shared this link before. I’m an American with T1D (dx 1986) living in New Zealand. I moved here with my family in July 2022.

A local podcaster interviewed me about what my experience with the NZ healthcare system as a T1D was like and I thought I’d share that link here.

If any Americans here are curious what it’s actually like living with T1D in a fully socialised healthcare system, this is for you. (Aside from visits to the GP, virtually all other healthcare is free). I’m pretty honest about the good and the bad.

Let me know if you have any questions. I love talking about this stuff.

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Thanks for sharing that’s most interesting. Certainly there are pros and cons between national health plans and the hodgepodge money driven system in the US.

When ever it comes up about waiting time, I remind people that we have long waits for somethings. Then the stories start rolling out.

As to high drug prices, I think that drug companies make reasonable profits at national health care countries. The difference here is that we don’t negotiate drug prices as one. Medicare is the worst on this.

The woman I think Liz is originally from England. She commented on issues that she had which I don’t think relates to the UK as a whole. It may be only in where she lived.

The UK has 3 maybe 4 NHSes England, Wales,Scotland and I suppose Northern Ireland. Someone I know lives in Scotland and has very good experiences.

BTW I knew that Liz was English not a Kiwi because I watch a lot of UK, Australian, and New Zealand TV shows. The NZ people do a weird vowel substation thing that is perfectly understandable but different.

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I’m no expert on the NHS but I do think you’re right, that in the UK it operates differently regionally. The system here in NZ also is not as cohesive as one might assume; medical records are not universally access or standardized. Even in Auckland the main city hospital still uses paper charts, whereas Middlemore in South Auckland uses a clunky home grown electronic system (systems like Epic are too expensive to license). GPs tend to use a software called MyIndici which does allow sharing of records, but the hospitals do not use this. Retail pharmacies (like GPs, are also private businesses) which also use an electronic system called Toniq which provides an element of uniformity lacking in the public system. (Pharmacies and GPs receive reimbursements from the government, but they will both say the payments are inadequate and need to be increased).

The big difference in the UK is that even the GP visits are free so the entire experience costs nothing out of pocket. However if you have insurance and see a private doctor, any Rx that doctor writes is not paid by NHS. Here in NZ the system does pay for Rx written by private doctors.

Since that interview, I’ve since had sinus surgery on the public system and bought private insurance and had a GI procedure privately. My daughter also had surgery to place a grommet (tube) in one ear. The private hospitals were very nice. Mine was like a fancy hotel with wood accents and modern furniture, whereas the public hospitals are all looking a bit shabby. But the quality of the care was the same. (In fact my surgeon was an American doctor from New Jersey, trained in Florida, and the nurse assisting was his wife).

For private procedures, insurance paid everything at 100% and of course the surgery (including an overnight stay) cost nothing. So literally our only expenses are the monthly insurance premiums (and the cost of any GP visits).

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Oh yeah. That’s a problem in the UK as well. I remember back in 1993 or maybe 1994 when I moved from Bedford to St Neots it took a whole 3 months for my new GP to get the records!

The damn system was meant to be computerized by then but was it? Nope. There were a bunch of boring old doctors writing everything down in their incorrigible handwriting and when they saw a computer they went full pants brown stuff.

That was, of course, before devolution so I guess the NHS is now split into four parts. I don’t know; I left the UK, permanently, in 1992 and I came to the land of the free. The US.

My medical records are now owned by a private corporation. It isn’t that bad! Come on; there are only two of them and they have some kind of arrangement with big mac cups and string and lots of money that allows them to communicate.

More to the point I came to this country with my medical records, carefully provided by Dr Henderson from Hinchinbrook; a T1D himself. It included various 35mm negatives of the back of my eyeballs. Lost to history, or, more accurately, lost.

The only doctor I had complete trust in here wrote everything down in incorrigible handwriting; I know that because when he retired the NP who took over asserted that fact. I remember those records, reams of paper stacked up, well organized, on the walls of his surgery. He had his reasons for being here, as do I.

What I liked about him was that he never suggested that I should stop doing those things that are very dangerous to my health: scuba diving, skiing, living where I live, not talking to people, chopping down trees, operating heavy machinery.

He did say he was going to kick me out unless I fixed my HbA1c, so I tried. Statins, nope.

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No different in the USA. We have 2 large hospitals in our town that cannot communicate records electronically. One of these hospitals cannot send scans to a sister hospital at the Texas Medical Center, by mail or hand deliverers.

They can send text by FAX😩

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That’s because of the two medical record companies; the transfer of records requires payment of money and the simple transfer of test results is barely, or maybe not, permitted. See the rest of my diatribe.

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Thanks for your perspective on this. So are you happy with the state of healthcare in the US?

Personally I am still working and I am absolutely delighted that I’ll never have to stay in a crap job just for the insurance.

When I read the (all too familiar) problems people have getting their insurance to cover things, after 3 years in NZ it just seems so… I don’t know, barbaric? I remember being in that situation and thinking how absurd it was. I remember seeing that my 90 days of empagliflozin cost $1,600 US. (Here I pay $80 NZ per 30 days– it’s the only medication I pay out of pocket for because it’s only funded for type 2 diabetics. But I note this is the full cash price, unsubsidised).

And it’s not like American’s don’t pay… when we were in the US we were paying hundreds of dollars in premiums each month and still had deductibles, copays and coinsurances. We paid about $6,000 US to have our daughter in the US. In NZ it’s 100% free.

I currently pay about $400 NZD per month in premiums for my private insurance (Southern Cross UltraCare+) and that’s it. Any private procedures get covered at 100%. I have small annual allotments for things like chiropractic, physio, etc. For example my chiro visits cost $55 but because I had an accident and hurt my back, the national accident insurance (ACC) kicks in and I only pay $35 (which Southern Cross reimburses me for, up to $300 annually).

We do have our problems and less choices overall for sure. But knowing my access to diabetes therapy is secure, and with our private health insurance eliminating wait times and providing extra cancer cover (which we hopefully will never need), overall I much prefer the system here.

Once CGM was (finally!!!) funded last year (Oct 2024), that was the last big piece of the puzzle solved. I get everything I need to manage my diabetes effectively for free. Pump supplies, CGM, even my insulin pump (Tandem), oral meds and insulin, is provided at no out of pocket cost to me. I just show up at the pharmacy and pick it up, and the cost in the receipt is zero. I’m still amazed by it every time I go.

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It’s called “irony”.

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I’ll take that as a “no”, then.

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Actually they have incompatible systems that will not talk to each other.

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Ah! You spoke to the marketing department.

It’s a fundamental of standardisation that when commercial implementations are in place they are standardised. Back in the day Edison and Tesla had different standards for the delivery of electricity in the US. They were sort-of standardised by the IEC. It’s not a very good approach; the IEC standards cost electricians a fair few bucks every couple of years for a set of totally meaningless and dysfunctional updates submitted by marketing departments. However it does mean that I can lean out of my bathtub and plug something into the wall without crying “Eureka”, or a more sarcastic Greek word.

So here is a very reasonable proposal. There should be a standard for Medical Records in the US. Of course someone will now imply that I’m suggesting eating someones’ babies.

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There’s this US thing about that word:

It’s this:

We hold these truths to be self-evident, that all men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness

If you are a USian double check the meaning of the last word in that sentence.

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Actually I spoke with the IT people for both our hospitals. I worked in telecommunications and installed and maintained fiber systems. So I knew their people.

Earlier I worked in R&D product development. I wouldn’t trust anything marketing people have to say about products. They will say anything to make a sale that we have to perform a miracle to serve the end user.

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So not either of the two companies in question.

We all have medical records. They record things that doctors think are relevant to our health. Those things are not dictated by IT, or computers, or anything other than our health and the doctors, who don’t know an IT from the third person singular.

If either of those two companies cannot communicate the medical information to the other then they are not storing the necessary medical information. The medical information is an invariant, the encoding is obfuscation.

In truth they both can communicate yet they choose not too. Your hospitals IT guys maybe aren’t enfranchised enough or simply arrogant enough to point out that they are being BSed but they are.

Edison and Tesla battled their peculiar and ridiculous argument out for years and harmed every single one of us. No change today, neither the names nor the arrogant attitudes. Sometimes standards have to be imposed and this standard is an unalienable right.

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I’m not going to continue defending my position. I know that these 2 hospitals, one new one old have no way to transmit records except by FAX, and you can not FAX imaging.

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@schleima, thank you for posting the video comparing your relative experience with US vs New Zealand health care systems. From my point of view and only informed by general knowledge and the content of your linked video, it looks like you made a good swap of health care systems.

I could go on and on about the expense and inefficiencies of the US health care system, but I don’t intend to provoke needless debate. US big Pharma and an entrenched mainstream medical care system enjoy such huge monetary benefits and are economically plugged into the political decision makers so as to be bullet-proof against fundamental change.

You made the right call for your family at least as far as a health care system meeting your needs.

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I have a friend here who used to work in Switzerland for a big biotech company. He told me that 50% of their revenue came from the USA simply because they could charge so much more.

In New Zealand it’s an interesting system. When Pharmac (the government agency which negotiates drug prices) approved CGM for all T1Ds in New Zealand, suddenly there were an estimated 26,000 new customers for the CGM companies, which would cost virtually nothing out of pocket. Prior to this, Dexcom for example cost $1,200/90 day supply. In one fell swoop, Pharmac effectively eliminated the cost barrier to entry for every qualifying diabetic in New Zealand.

To get to this point, Pharmac opened up a “tender” system whereby all CGM companies who wanted access to the NZ T1D market submitted a proposal with their best prices. Pharmac took prices into consideration but also looked at the utility of the CGMs (integration with pumps).

As a result of this, Pharmac approved Dexcom (because of versatility of pump integration) and Freestyle Libre (because of lower cost). Very often Pharmac will only approve one tender, so having two options was a nice surprise. This is often how it works for prescription drugs as well. There will be one drug approved by Pharmac, and the competitors have to decide if they want to remain in NZ (knowing people are getting their competitor’s product for free) or pull out of the market entirely. Less choice, but saves on costs.

The big loser in NZ CGMs was Medtronic, which was eliminated from public funding. Diabetics currently on Medtronic pumps/CGMs had to transition to one of the funded pumps, either Tandem or Ypso Pump). This effectively drove Medtronic out of the NZ market.

I know in America the “free choice” crowd would find this wildly problematic. But it’s not a matter of the government saying “you can’t sell your drug here”. There is a competitive price battle between companies, who have to decide how many profits they’re willing to sacrifice to access the NZ market.

Clearly letting drug companies charge whatever they want has proved to be a disaster in America so a bit of gentle guidance from the government and incentives geared to prioritise the public interest (rather than drug company interests) is a better way to go.

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Does NZ have any policies in place to prevent drug shortages as a result of this? In my country drug pricing works a little differently, but sometimes drug shortages arise because drug companies no longer bother entering our market due to its small size and low profit margins. As a result of negotiations with insurance companies, one manufacturer can effectively become a monopolist and then we’re very vulnerable when that one company has manufacturing problems or for whatever reason withdraws from the market.

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I haven’t personally experienced drug shortages and can’t recall ever hearing about it in the news. Thiscis not to say there aren’t other problems. For example when we arrived in 2022 there were two over the counter “dry cough” medicines available, pholcodeine and dextromethorphan. Dextromethorphan changed designations from over the counter to “pharmacist only” (meaning you still don’t need a prescription, but the pharmacist has to talk to you about it and record your details before selling it to you). Rather than comply with the labeling changes, all the dextromethorphan suppliers pulled out of the NZ market. Includes big international brands like Robitussin. This left us only with pholcodeine, a much less effective and overall worse medication. Then Australia determined there was a potential harmful side effect from pholcodeine if you had taken anaesthesia and pulled it from the market. New Zealand soon followed. So now we have nothing available to treat dry cough. Chesty cough meds like guaifenisen are still readily available over the counter.

For prescription meds, there is an interesting policy. If your doctor prescribes you something not approved by MedSafe in New Zealand, the government can’t prevent you from getting it. That means we effectively have access to a global supply of drugs. You might get a drug from the Netherlands, for example, and everything is written in Dutch. Which is a problem if you can’t read Dutch :slight_smile:

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In the Netherlands we sometimes get drugs imported through parallel trade, but then the importer or pharmacy has to put a Dutch label on the packaging and provide a Dutch package insert. Is there no such obligation in NZ?