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The case for survival: Trying to find insulin to live without insurance

Written By Dave Shirer, For The Globe

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Insulin, the only treatment for Type 1 Diabetes (T1D), is absolutely necessary. It is like air or water; without it I’d die in as little as 48 hours. There have been too many stories of young adults dying because they resorted to rationing insulin because they can’t afford it. Just imagine trying to live, but only breathing 50 percent of the time… it just doesn’t work.

I have now had T1D for over 21 years. When I was diagnosed at 9-years old I didn’t have a full understanding of what it all really meant, I just knew I had to take insulin shots for the rest of my life and count everything I ate. I also had no understanding of health insurance or drug costs.

Fast forward to turning 26. I was in a really crappy job, but it had decent enough health insurance. This was the first time I was paying for my own supplies and insulin. At that time, with my insurance, I could get a 90-day supply of Humalog insulin for about $100, plus the cost of other supplies.

I stayed in that job for way too long, because it was convenient, I had health insurance and finding jobs is the worst. This is often the case for T1D’s, we need health insurance and will waste away in meaningless jobs just because of the health benefits.

When I eventually got a job in my field I was beyond excited. Finally, I would be doing something I enjoyed. I moved from Pittsburgh to Jackson, Mississippi to work at a small university just outside of the city. I hadn’t even asked about the insurance packages the university offered. I quickly found out the insurance plans were garbage. I needed my insulin, so I went to Walgreens for a 30-day supply – it cost me $250.

I was able to get enrolled with a mail-order pharmacy where I could get a 90-day supply, but that still cost me over $200 every three months. I had gone with the insurance package with the lowest premium, but it had a very high deductible. I was stuck with that insurance plan for a year until the open-enrollment/change of coverage time came around. When it came to that time, I changed to a plan with a higher premium, but a lower deductible. I honestly don’t remember what I was paying for my supplies at that time.

I lost that job just a few months after I changed my insurance plan, and before anything really showed a change in costs for me. I was able to get a 90-day supply of insulin just before my insurance ended, so that was extremely helpful. At that time, a non-profit pharmacy that my dad had worked with through the planning phase, was donated a supply of insulin and supplies. Through those connections, I was able to get that insulin and supplies at no cost, just needed a prescription sent to them.

I received my 90-day supply of insulin through my insurance, got this large supply from the non-profit pharmacy, so I didn’t have anything to worry about. During this time, I never got to a point of actually rationing my insulin, but I would skip meals, or eat differently to avoid having to use insulin. And through my four different jobs, church events and good friends, I knew how to live cheaper, find free meals and have people to take care of me.

In Feb. 2018 I moved back home to Pittsburgh from Jackson to save money. I started working part-time at a restaurant to fill my time, but had no insurance. Feb.  2018 I had put the last of the insulin I had left into my pump, which would last me 2-3 days. I immediately put a post on Instagram and Twitter. Within minutes I was getting shares on Twitter and messages on both platforms. I even found a guy in Pittsburgh that dropped one off at my house for me that day.

I had insulin to last me a month or so. During this time, I also learned of some pay-it-forward groups on Facebook. Diabetics all over would post items that they had surplus of, or people posted what they needed. I was able to make connections there to get all types of supplies and some insulin.

In May 2018 I was out of insulin again, and getting ready for vacation in a few weeks, so I posted on social media again. Again, I got shares and messages from complete strangers willing and able to help. I also met a woman (now a good friend, and basically my guardian angel) who had seen my tweet shared by someone in Texas, but she lives in Pittsburgh, so I was able to connect with her and get supplies.

Summer of 2018, I also got connected with a group called T1Yinzers, a group of adults with T1D. We have meet-ups every few months, talk about all kinds of things. This group along with the Diabetic Online Community have been incredibly helpful to me, and so many others.

I posted to the T1Yinzers page in Oct. 2018 asking if anyone had insulin, my guardian angel messaged me that day and was able to give me a few months’ worth because her mail-order pharmacy double filled her prescription. I’m still using what she gave me, along with samples I have been able to get from my doctor’s office.

It has been a wild few years, but the fact that I’m here to tell the story is even more impressive. No one should have to decide between insulin, and food or rent. We are stuck in a very flawed system that needs change – access to insulin is a human right.

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