‘Alec was looking at a cost of $1,300 a month.’: Mom raises awareness after son who couldn’t afford insulin dies

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“On May 8th, 2015 Alec was feeling horrible and decided he needed to see the doctor because his flu like symptoms he had been feeling for several days were getting worse, he complained of vomiting, leg cramps, muscle aches and frequent urination that was keeping him up at night. Alec called me several hours after going into the clinic and reported to me that the Dr. diagnosed him with type 1 diabetes, he was just turning 24. At the time I truly believed it was a mistake, I thought only kids got diagnosed with type 1. It was a very scary and stressful time for the entire family, we all worked really hard to learn more about type 1 and how we could help Alec stay healthy. Here is Alec’s post from the day he was diagnosed:

‘I just wanted some of my friends and family to know and be aware of what is real and what can happen if you don’t take care of your body. I was diagnosed with type 1 diabetes today and it might not seem too serious to some people, but I would never wish this on anyone. Please take care of yourself and cherish every moment in your life!’

I really hope that the Dr. did not make him feel like he did something to cause type 1, type 1 is not something you can prevent, there is nothing that you do to cause it and currently there is no cure. Type 1 diabetes is an autoimmune disease, your pancreas stops working, it no longer makes insulin so this is why all type 1 diabetics require insulin several times a day to stay alive, without it their bodies shut down and death occurs.

On June 1st 2017 Alec was removed from my health insurance because he turned 26 on May 20th 2017, without the assistance of insurance Alec was looking at a cost of $1,300 a month to purchase his 2 types of insulin and all the necessary diabetic supplies. Diabetes is considered one of the most expensive diseases.

Courtesy Nicole Smith-Holt

Alec and I searched for new insurance prior to him aging off my plan but what we found shocked us, he was employed full time and made a decent salary as a manager of a restaurant, they did not provide benefits. He did not qualify for medical assistance or MNSURE, he did not qualify for any subsidy through the ACA so we were looking at insurance on the marketplace. What we found was absolutely ridiculous, we found plans that ranged from $300- $800 a month with crazy high deductibles that ranged from $10,000 to $4,000. The plan we considered because he could keep his same clinics and Dr. would run him $450 a month for the premium and had a deductible of $,7600. After careful consideration he decided he could not afford the monthly premium and still pay his out of pocket cost of $1,300 a month until the deductible was met and still continue to pay his bills every month, so Alec decided to not buy the insurance plan and just pay out of pocket the monthly cost of $1,300 for insulin and supplies. Well this did not go as planned, it appears that when he needed to get his refill he did not have the $1,300 in his bank account so he was rationing the little bit of insulin he had left to last until pay day. I do not know why he did not ask for help, it still bothers me to this day that he never asked for money, I wish he had asked us for help because we would have given him whatever he needed.




Courtesy Nicole Smith-Holt

Alec Raeshawn Smith, born May 20th 1991, was found dead on June 27th 2017 from Diabetic Ketoacidosis, Alec died because he was unable to afford his life saving medication called insulin.

My belief is that he did not want to seem like he was failing, he did not want to seem like he was not being responsible or independent. Alec had only been living on his own for 6 months and when we discovered the high price of the insurance and the extremely unaffordable cost of his insulin and supplies we tried to encourage him to move home to ease some of the burden. He really wanted to keep his apartment and maintain his independence. I truly think he did not know that rationing his insulin, depriving his body of what it needed would cause death, I often wonder how much diabetes education he was actually given.

My son was such a strong, sensitive, sweet, hardworking and caring young man. He was always cracking jokes, doing something goofy just to make people around him laugh. He was loved by so many people and he is truly missed.

Courtesy Nicole Smith-Holt

Alec had a great love for friends and family, he thought of most of his friends as brothers- they were family. Alec loved sports, he loved to play them and to watch them. He was a true fan of every MN sports team and was one of the best smack talkers around, his friends enjoyed watching sports with him just to hear the smack talk. Alec enjoyed camping, hiking, fishing, boating and just being outdoors. He enjoyed music and was often found at a music festival or concert. Alec enjoyed spending time with his family at BBQ’s and bonfires or hanging with his little brother at his sporting events. Alec had a love for travel, he had so many more places on his bucket list to visit, our last family trip was in 2014 where we took an 8 day cruise to several Caribbean islands and spent a few days in Florida. I will forever treasure those memories. 2 months prior to Alec passing away he went with his girlfriend to California where they enjoyed celebrating her birthday.

Since the passing of Alec I have taken to advocating for Alec and every other diabetic. The rising cost of insulin and supplies has impacted all diabetics. The price of insulin is unaffordable and is resulting in deaths and forced many families into debt. Over the past 20 years the price of insulin has risen over 1200%. Many families are reporting that they struggle to afford insulin even with insurance. My goal is require the 3 insulin companies to lower the list price of their product, I feel like these 3 companies know they can charge whatever they want for insulin since every single type 1 has no choice, they must pay whatever the price is if they want to live. People are dying out here and it appears they are only concerned about their profits, last year their reported profits were in the BILLIONS. We are also advocating for transparency, we would like to know how much it really cost to make a vile of insulin and what is the profit from each vile? These are questions that have been asked of them repeatedly and we have yet to have an answer.

My hope from sharing Alec’s story is that people will become educated about diabetes, about the struggle to have affordable and accessible insulin. My hope is that people will hear our story and know they are not alone, there are very strong advocacy groups to help you share your story and to raise your voice to help make a difference. I hope that people will come forward and share their struggles with affordable and accessible insulin, or share that story of a loved one who also died because of the cost of insulin. The more we use our voice to share these stories, the more awareness for this problem we’ll create. I felt alone after Alec died, I thought for sure no one else was struggling with affordability. But I was wrong.”

Courtesy Nicole Smith-Holt

This story was submitted to Love What Matters by Nicole Smith-Holt of Richfield, Minnesota. Learn more about how you can help at T1 International. Be sure to subscribe to our free email newsletter for our best stories.

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