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Patient Experience: Living with type 1 diabetes

Published on 14/04/20 at 12:22pm

23-year-old US student Madelyn Lazra recently graduated with a BA in Business Law and certification in International Business, and is set to go to law school in Autumn. After having lived with type 1 diabetes for nearly 10 years, she recounts her experience of managing it and the challenges she has faced around the price of insulin and others’ understanding of the condition.

Can you retrace your steps to how you reached your diagnosis?

I was 14 years old when diagnosed with type 1 diabetes. I played on two soccer teams – a city league and a club team – and my mother and I drove to Chicago from Ohio for one of my club tournaments. At this point, I’d been dealing with illnesses for about a year. I was always sick, always missing school, always seemed sluggish and angry. It was almost like I was depressed, everyone was worried about me. This tournament was when my coach and my mom realised something was really wrong with me. I couldn’t play for more than five minutes without needing to leave the field to drink water. Then, I’d need to run to the restroom almost immediately. 

That night in the hotel room in Chicago, I woke up my mom because I was drinking water out of bottles so fast. She could hear the crackling of the bottles at 3AM. Then, I got up to use the restroom again; I did this multiple times that night. Since we were sleeping in the same room, she was witnessing this for the first time. I’d been doing this every night for weeks at home, but I had my own room so no one knew. 

When we got back to Ohio, we went to my paediatrician. He made me pee in a cup, then he came back and said: “Go to the ER right now. Don’t pack a bag, just go. Call your husband and tell him to bring your bags. Just go straight there.” So we did, and a few hours later I was diagnosed with type 1 diabetes.

How did this condition evolve? Do you remember where the condition got better or worse over the years?

My diabetes evolved a lot this past year. During the first seven years I didn’t take the best care of myself because I didn’t know how. Yes, I had access to my insulin but it’s more complicated than that. I couldn’t count carbs correctly, my insulin-to-carb dosage ratio was out of whack, my basal rates on my long-acting insulin made my day full of roller coaster highs and lows and I had absolutely no clue how to time insulin. My doctors never taught me very much. They kind of just said: “Your numbers are bad. Here’s your prescription. See you in three months.” It sucked.

Last year, I found the type 1 diabetes online community and it changed my life. I learned so many little tips and tricks from other girls with type 1 diabetes that it brought my A1c down to 5%. I couldn’t believe it. Online, I feel like I have thousands of friends sometimes; you never feel alone. We share tips with each other, give each other advice and validate each other’s feelings. I have also met quite a few online friends in real life at meet ups and small diabetes events. It’s super awesome.

So how do you manage the condition in your daily life?

I take insulin every day and will have to for the rest of my life. When you have type 1 it means your pancreas can no longer produce any insulin and never will again. It’s an autoimmune disease, so basically my body attacked my pancreas’ cells that make insulin. It is not preventable. 

I also use devices like an insulin pump and continuous glucose monitoring (CGM) that helps me use less insulin. When you are on an insulin pump, you only use one type of insulin: a rapid-acting analogue. If you just do injections, you rely on a rapid-acting analogue and a long-acting analogue, so the cost of insulin is going to be much higher than mine. I did injections for the first four years. It was expensive.

How much insulin do you have to buy a month to treat the condition?

I only use one vial per month, but I’m a 5’2 115lb 23-year-old woman with no kids. A teenage boy who plays football and is muscular could have to use three vials a month. No one really ‘regulates’ the price of insulin, manufacturers pretty much do whatever they want. It’s still $275+ per vial around the country and it’s gone up over $150 per vial since I was diagnosed in 2011. It has increased almost every year since then. Eli Lilly makes my insulin and their reasoning for price increases is “research and development”, but we aren’t buying it anymore. 

Analogue insulin is about the same age as I am. How come I can drive to Ontario, Canada and buy the same formulas for $36 with no prescription? The American Government is run by and for multi-million and -billion dollar corporations like the insulin manufacturers. They pay off our representatives, therefore nothing changes and they are free to charge what they want. They have control over our government and the innocent, chronically ill American people.

If you’re on government insurances it does help a lot, but you still have to pay co-pays sometimes and that can be expensive. There is human insulin on the market for around $25 but it is nothing like analogue insulin the rest of the modern world puts their type 1 patients on. Many type 1s who have switched to human insulin from lifelong use of analogues have died.

What are some misconception about type 1 diabetes?

I would say that people think type 1 diabetics “grow out of” their disease since it’s so commonly diagnosed in childhood. I remember people telling me “well, it’s juvenile diabetes so at least you’ll grow out of it.” This is so wrong! Type 1 diabetes is forever.

Another misconception is that we can “get off” insulin. At diagnosis there is an immediate need for insulin. Sometimes a type 1 can get away with not taking insulin until a few months after diagnosis because their pancreas still has a little bit of effort left in it (this is called the “honeymoon phase”), but after that, you have to inject insulin for the rest of your life or you will die. Insulin is a natural hormone every human being produces. Your pancreas makes it all day, every day to keep you alive, even when you’re asleep. Mine can’t make insulin because of an autoimmune attack. It has nothing to do with diet or lifestyle at all.

If you could go back to the start of your journey with the disease, what advice would you give yourself?

I would tell my 14-year-old self that I’m not doing anything wrong. That my highs and lows are not my fault, and that I didn’t have the right support, but that I’d find it someday. Diabetes is hard, as is any type of diabetes, and people always want to make it seem like your high and low blood sugars are your fault. They don’t understand that this disease is extremely difficult.

I would tell myself that I’m okay, I’m going to get through this and I am doing everything right. I would also tell anyone who is going through the first few years of a type 1 diagnosis: do your research! Even if your endocrinologist is amazing, there could be something they forgot to tell you. I learn new things every month that help me just by communicating with other T1Ds online.

How are you feeling about the future of living with diabetes for yourself and others?

I am feeling good about the future living with type 1. I feel like more and more people are starting to understand what it really is and that it can happen to anyone, even their children. It doesn’t have to run in your family, and I feel like people are starting to understand that. I also am very happy with the recent technology being released to manage type 1 diabetes. When I was diagnosed, there wasn’t anything that fancy...I didn’t even get a pump until four years later because nothing was really that life-changing. Today, I have an artificial pancreas, which basically means I have an insulin pump and a continuous glucose monitor that communicate with each other. It’s pretty awesome, but I still have to do a lot of the work, especially at meal times. I think once we bring down the list price of insulin in the USA, the future with T1D will be positive. We have built a great community for this disease!

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