From Type 1 to Pre-Med

Six months ago, we got on a plane headed for the farthest corner of the world. As experienced travelers, we weren’t nervous about taking on New Zealand but we were worried about Damián’s diabetes. No matter how much practice you have managing an auto-immune disease, there will always unexpected events. You can usually prepare for these changes in your normal life but traveling adds another layer of unknowns.

Yet we went anyway – because one must always do what they think they cannot – and luckily, Alex was waiting for us in Auckland. Through our contact with the Diabetes New Zealand Northland branch, Alex immediately befriended us and offered a corner of her fridge space so that we could safely store some of Damián’s insulin supply while we traveled around the country. She was the very first stranger who helped us on our mission. But we were so eager to get on the road that we didn’t get a chance to speak with her at length until we returned to the city for our departure this past month.

Alex is just as we had imagined her: kind, exceptionally intelligent, and a passionate advocate for health. She has not allowed her multiple conditions of type 1 diabetes and Addison’s disease to curb her enthusiasm for life. Instead, she has used it as a source of empowerment to help others and to strengthen her own fierce resolve. Here is her story.

When were you diagnosed with type 1 diabetes?

I think it was 2008, but I was 23 years old, which was the significant part. I was already an adult and living in Wellington.

How did you receive the news?

I had been really unwell for a couple of months while I was traveling around Europe. I was also putting together applications for grad schools in the U.S. and I was supposed to visit them on my way back to New Zealand, but I felt so unwell that I cancelled all of those visits and just came home. I tried to rest – just to sleep it off – but that didn’t happen obviously.

One day after work I decided to go to an after hours clinic in Wellington and I was instantly diagnosed with diabetes by the doctor who was on call. They sent me to the hospital – they told me to just walk down the street to the hospital. So I walked, really upset. I didn’t know what diabetes was or anything.

I remember there was a team of people at the hospital. There was a trainee endocrinologist who came in all excited about my case. They gave me some Lantus. My sister arrived and she was with me the whole time from that point on. Then they just sent me home and told me to come back in the morning. I didn’t even know yet that I would have to be on insulin every day for the rest of my life.

I remember feeling really in limbo. I had no idea what my diagnosis meant, I had no idea why I was going back to the hospital the next day and what would even happen. I still really didn’t know why I felt so crappy and why I had lost so many kilos. I remember drinking so much water that I felt like I was going to be sick. I had put so much liquid into that thirst. There is nothing like it. It just never goes away.

And I remember the nurse saying to me: “Well, you know, at least it’s not cancer.” It was not the right thing to say, and I never expected that kind of comparative suffering from a diabetes education nurse.

How would you evaluate your personal health care experience in your country?

New Zealand has both public and private health care systems and I would say that most people access the public health care services unless it is for something very selective.

I have mixed feelings about the New Zealand public health care, especially having lived in the United States. I had really amazing health care there, but it was also through a really expensive insurance that I never would have been able to afford on my own. I got it through Stanford University and it was the best health care I’ve ever experienced in my life.

Prior to moving to the U.S., I thought that New Zealand was the best. Everything was virtually free or extremely low cost and to me, that meant that it was the best. That was the sole determinant of whether or not something was good: how much do you have to pay for it? I think the ethics is what I approved of and I still support those ethics really strongly. I think it’s wonderful here that everyone gets something. If you can’t afford your co-pay, you will still get your medication.

However, it’s not the best. And the best does exist, so that’s really frustrating. In New Zealand I’ve never really been encouraged to improve my diabetes management. After the diagnosis, it was more about grappling with the disease and understanding the mechanics of it. But as I learned more about it and needed to understand the subtleties to really hone in on how I was doing things and the decisions I was making, I felt like the support just wasn’t there.

For example, I often find that I know more about the medications I might need than my GP because I’ve done my research. And I’ve never met a dietician who knows about counting carbs. It seems like they just print lists off the Internet that they don’t even memorize themselves. So unless you are a really strong advocate for your own health, I feel like you end up getting second tier treatment.

In the U.S., I had this amazing endocrinologist. He was so critical. I’d turn up and he’d be like, I want to see your meter and all your results for last month. He’d go through them all and ask me: What happened here? This is a pattern. Did you know about this pattern? My HbA1c has never been bad. At it’s best, it’s been 5.2 and at it’s worst, it’s been like 7.5 It’s always been pretty tight. But he would say: No, you need it under six. Your A1 should be under six and you can do it. And he made me. He also diagnosed me with Addison’s disease immediately. Addison’s disease means that my adrenal glands don’t work. My cortex cells don’t produce any cortisol or aldosterone and that affects my body in many different ways. His diagnosis was incredible because I had been to emergency rooms all over California and nobody had picked it up. He got me on an insulin pump right away and it’s been amazing. My medication for Addison’s makes me insulin resistant so the pump helps me to better control my insulin flow. With Lantus, I was doing two or three injections and trying to get it right, but I couldn’t.

In comparison, I’ve been back in New Zealand for over a year now and the doctor still hasn’t asked for my records. They look at my HbA1c and they see 6.2, 6.3, great, tick, done. Off you go. And I’m like: Well, I have some questions. Do you think we could talk about those? So now I am willing to pay $400 to see my endocrinologist in the U.S. because I know he will actually help me with the questions I have.

In the New Zealand public health care system, if you want to truly understand how things are going and how you can improve your situation, you have to push for it. Really, really hard. And that’s a shame because you shouldn’t have to go and get a degree in medicine in order to take care of your diabetes.

How do access your insulin and what type of insulin do you use?

I use Novarapid which is the same as Novalog, with a Medtronic insulin pump. You only use fast-acting insulin with a pump. I pay $5 for a three months supply. I buy my test strips on Amazon when I’m back in the States because you can’t buy them here. I use the ones that send the results directly to my pump. You can’t get these in New Zealand because the New Zealand government has only approved one specific type of glucose meter for people to use. The one they have chosen is terribly inaccurate so I don’t use it. What I like about my pump is that it does a lot of math so that I don’t have to. You can just program it and off you go.

What is the average wait time to be seen by an endocrinologist? How many visits do you make a year?

 It seems like they want to see me about once every three months, but I’ve never had the same specialist twice in New Zealand because you just get assigned whoever is available to see you. I will get a letter from the diabetes service to say that they’ve scheduled me an appointment with a diabetes specialist. Not an endocrinologist – which is usually what I need since I have multiple conditions (type 1 diabetes and Addison’s).

And they schedule it without asking you if you can make the appointment. They just give it to you, and if you want to change it, you have to call them and ask them to reschedule. But that might mean you don’t see someone for two months or three months, rather than a month away.

In comparison, I can schedule my appointment online in the U.S. and be seen in the same week. So I think the New Zealand system is not as patient focused as it could be.

If you could change something about the current health care, what would you change?

To put it simply, the New Zealand health care system needs more money. I’m coming at my disease from an extremely privileged position. I am an educated person who is also willing to figure a lot of my medical needs out on my own and that alone puts me in a really advantaged place. My husband can afford to help me out with my supplies and access to high quality care even though I’m not making money while I’m studying pre-med at the moment. So I feel bad complaining because I know I’m really lucky.

But, in solving the problem for myself, it doesn’t solve it for anybody else. And that’s what I struggle with. Better solutions for our medical problems exist but the money just isn’t there. I wish New Zealand was a wealthier country and/or had higher taxes, but I just don’t think they have many funds at all, across the board.

We need a bigger, stronger economy. It’s a marriage, isn’t it? I feel like you have to have the economic resources and you have to have the people making the policy decisions for health care to be successful.

Are you comfortable traveling long distances with diabetes?

Yeah, I think so. It’s definitely challenging. There are a lot of places I haven’t been or I haven’t really tested so I don’t know how to answer that exactly.

I have often thought: I would love to go to India or Africa one day and then I have this other thought: Yeah, but you’re going to get really sick and it’s not going to be very fun. So it definitely is a limiting factor. What if I had to go the hospital in a country where they didn’t really have hospitals in the way I would like them to be? I could see myself getting to a place where I would have the medicine and the equipment I needed to be able to go there, but even so… Is it really worth it? It’s a question that definitely comes up when I think about traveling.

Do you think the diabetic community is supportive and do you think people in New Zealand are well informed about diabetes?

Community is an interesting thing. The people I have met here are really supportive. They organize meet-ups from time to time and I help out at diabetic kids camps in the summer, but on the whole, there is less formal organizational power. For example, there is nothing at the university here. I have hosted some meet-ups at the university there just to provide some kind of space, but it’s really hard when you’re trying to excel, time-wise. It would be great if the university provided support. Every university in the United States provided that. Support is important, especially for type 1, because you’re running a marathon. You’re in it for the long haul and you need people to connect with from time to time.

There is some support, but it’s a little more scant than it should be, and I feel like once you are an adult in New Zealand, there’s nothing. For kids, there is a little bit, but for grown-ups, there is nothing.

And no, people don’t have any awareness at all about diabetes. I am constantly going: Oh, cool! when it becomes evident that a person doesn’t know the difference between type 1 and type 2 diabetes. This means: Oh, cool! I get to be the one who explains to you what the difference is. That’s a better response than: You didn’t know there was a difference?

I have the experience a lot where people want to know something, but maybe they don’t ask any more questions because they feel its too personal. For me, nothing is personal. You can ask me anything. People are really interested and they have questions and I really like that, actually. It feels really good to be able to explain something to someone who then might go on and meet someone else and be primed for a better interaction.

Damián: Yeah it kind of reminds me of this one time I met a Korean guy in Bilbao. I asked him where he was from and he said, “Korea.” And I said, “South, of course.” And he responded, “Thank God you know.” It’s like that when you meet a person who knows the difference between type 1 and type 2.

 [Laughter]

 Alex: So is type 1 the North or the South?

Damián: I don’t know!

We finished our evening with Alex feeling both inspired and relieved. Inspired because she felt so comfortable in her own skin and relieved, because Alex shared with us that she is preparing to go to med school. We cannot imagine a better candidate. It is a relief to know that people with her experiences are entering the health care field. Diabetes takes our lives in new directions but when examined carefully, there is a still a lot of good to be found, and Alex certainly embodies the best of it.

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One Comment

  1. Sue Lebby
    May 18, 2017
    Reply

    Great interview Alex. Very interesting to hear the comparisons between the U.S. and New Zealand. All the best to you.

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