You Were Just Lucky: How Circumstance Determines The Healthcare We Get

“You could have a thyroid condition”, the doctor suggested as she felt my neck with both hands. “Or, it could be diabetes”. I looked the other way as she pricked my finger; my blood sugar read 28 mmol/l (504 mg/dl). The doctor looked worried. I didn’t yet know what diabetes meant.

I was diagnosed with Type 1 when I was 23, while I was in the middle of applying to graduate school to study music. It was the end of winter, I had become increasingly unwell while travelling solo through Europe and had cut my trip short, returning home to New Zealand earlier than planned. A week later, exhausted, thin and thirsty, I sat in the ER.

There, I was seen briefly by the on-call endocrinologist. I was given some long-acting insulin and told to come back the next day; I could begin my diabetes education as an out-patient. 24 hours later the hospital’s diabetes nurse explained to me what Type 1 was, and what I needed to learn in order to manage it. She patiently taught me how to check my blood sugar and started me on NPH and Novolog (Novorapid). I remember the disbelief, asking her what I did wrong to have a disease like this. She said you didn’t do anything, you were just unlucky.

In New Zealand we have a national healthcare system arranged geographically in 20 District Health Boards. Each area has slightly different needs, so each Health Board makes decisions about how services are arranged for their particular population. The whole health system is funded by general taxation and costs about $15 billion per year [for 4.5 million people]. NZ residents aren’t charged for emergency services, hospital visits or necessary procedures like surgeries, cancer treatments, hospital stays or ER visits: my diabetes diagnosis didn’t cost me anything. It does cost to see a family physician, between ~$30-$80 depending on your income status and their set fee. We pay a $5 co-pay per pharmacy prescription. Children under 13 are exempt from both doctor’s visit fees and the $5 prescription charge.

One of the unique things about our healthcare system is PHARMAC, the government agency that decides which medicines and medical devices will be subsidised, and therefore which medicines will be available in hospitals and to patients at the pharmacy. They also issue guidelines that decide which patients are eligible for which medicines. Because they negotiate big contracts directly with pharmaceutical companies, their buying power means huge savings for the District Health Boards, and ultimately for NZ patients. Everyone gets the basics, and they get them either cheap or free. The downside is it restricts which medicines and devices we have access to: anything that falls outside PHARMAC’s schedule is either not available, or available only at retail cost. There is only one brand of glucose meter funded, for example; two brands of insulin pumps (which have strict funding criteria that makes them hard to get), CGMs are not on the schedule and would cost a patient ~$500 a month.

About a year later I was on a 12-hour flight to San Francisco, headed to Stanford University to start my doctorate. By this point I knew about carb-counting, how to treat hypos, and the “special effects” of exercise and alcohol. I had also been switched to Lantus (I was having hypos constantly while on NPH, which meant that by PHARMAC criteria I was now eligible for Lantus!).

During my first week on campus I decided to try out my American health insurance and visit the student health center. I was referred to an endocrinologist at Stanford Hospital. I wasn’t used to seeing an endo as my main diabetes provider: in New Zealand most of the care is managed by a CDE. My new endo set very high standards: they wanted food logs, numbers, records, print- outs….they queried spikes and dips in my BGLs, helping me strategise ways to even them out. They also constantly asked whether, or rather when I would get a pump: they promised me I would love it. Only a very small number of Type 1s in New Zealand use a pump because the PHARMAC funding criteria is so strict. As a result, many CDEs here are inexperienced with pumps and uncomfortable advising patients on their management. In the USA—and certainly among Type 1s with health insurance—it seems that pumps are the norm.

The diabetes support I found in the USA was amazing: I was excited by the encouragement to analyse my condition and always look for ways to improve it. I found CarbDM and attended education events and meet-ups. But my pharmacy trips were more expensive: I now had access to any kind of meter or insulin I liked, but my copay was $35 per prescription. I started imagining what it must be like for people with chronic illnesses who don’t have insurance.

3 years later I was diagnosed with Addison’s Disease and autoimmune hypothyroidism. The steroids I was prescribed changed my insulin needs quite dramatically: I now need very little insulin at night and more in the morning. A pump was the perfect solution, along with a CGM. My monthly out-of-pocket health spend was now ~$200, but I was so grateful for the results of this fantastic technology that I handed the money over. I thought constantly of the patients for whom my Stanford-level healthcare was completely out of the question. I started volunteering at a community health clinic, helping patients with type 2 diabetes near where I lived in Oakland, CA.

I graduated from Stanford last December and I’m now back in New Zealand studying science and public health: my experiences as a patient and a volunteer have shifted my value system and I want to be part of solving one of the most complex problems we face: how to help all people gain access to the best healthcare possible.