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Photo courtesy of T1International and Bob White

On June 27 2018, Elizabeth Rowley, Founder and Director of T1International, attended the Affordable Medicines Now conference put on by Public Citizen in Washington D.C. (USA). She read the below statement on behalf of Nicole Smith-Holt, a dedicated advocate fighting for affordable insulin for all. There’s a reason why insulin the high cost of insulin matters to Nicole. In 2017, Nicole’s adult son lost his life to Diabetic Ketoacidosis (DKA) because he could not afford his insulin.

Back in April I was contacted by Public Citizen and they asked me if I was up to attending a conference in June on access to meds. I responded with an “I would Love to” as long as it fits into my schedule and as long as I can fit it into my budget. A few weeks later they sent me a link to learn more about the conference and to view the schedule. My heart sank when I saw the dates. You see today, June 27th, is the 1 year anniversary of Alec passing away.

Some of you who are attending this conference my not know me, and you may not know my son Alec Raeshawn Smith. Let me give you a brief run down on who Alec was.
Alec was just turning 24 in May of 2015 when he was first diagnosed with type 1 diabetes. To say we were all shocked would be an understatement. I was scared, I was so scared for him. He seemed to handle his diagnosis well. Sure, he went through a period of time of asking “why me?” but he bounced back rapidly and took his diagnosis seriously. He met with his diabetes specialist and dietician, he made life style changes, he made dietary changes, and he made mental changes. He did very well as a new diabetic. I was really proud of him for facing these challenges head on and with dedication. He needed to take his illness seriously because he had a little girl, a daughter, who needed her dad to be healthy.

Fast forward to 2017, Alec turned 26 on May 20, 2017 and this meant he could no longer be on my health insurance policy. On June 1, 2017 he officially was uninsured, I was terrified!!! We searched online several months prior to this for insurance through the ACA and found out he made too much money for the subsidy or for medical assistance. We were forced to look at insurance through the market place. I cannot believe the prices of a policy on this site, we found only high premium and high deductible plans. Alec considered a plan that would be $450 a month with a $7600 deductible. After playing with numbers and his budget, we realized that the plan would not be affordable.

At the time, we believed his out of pocket monthly cost for insulin and supplies would be about $1000, which would mean he would have paid for his premium of $450 a month plus the out of pocket expense for at least 7 months before insurance would kick in. After seeing these numbers Alec made the decision that he would skip insurance and just pay at the counter until he could find a different job that offered insurance.

Alec survived just 27 days after being dropped from my health care plan. Alec went to the pharmacy in June, we believe it was around the 20th, to fill his prescription for insulin and pick up his supplies. When he got to the pharmacy he was told his total was $1300. He was planning for it to be $1000 and he did not have $1300, so he left without his insulin. He was found dead, alone on his bedroom floor on June 27th at 5:20pm. My son died from Diabetic Ketoacidosis (DKA) because he could not afford the price of his life sustaining insulin!!! We believe that Alec was trying to stretch the last of his supply of insulin until pay day, which was June 30th. He was found with completely empty pens littered all over his apartment. Unfortunately, the medical examiner took both of his insulin kits with the body so we cannot verify if there was any insulin left in his remaining pen.

Prior to Alec’s death we had no idea there was a diabetes online community. I wish I had known about this community, the resources, the advocacy and the support that is available. If we had only known, maybe he would still be alive. There are so many what ifs – things we could have done differently if we had only known. If only the price of insulin was affordable. It breaks my heart to hear of the daily struggles to afford insulin. We need to keep fighting this huge battle to prevent deaths like Alec’s. Insulin is considered an essential medication and should be treated like it is. No person with diabetes should be going into debt to afford insulin, no person with diabetes should die because of the cost of insulin. Diabetes is stressful enough with just trying to manage the disease 24/7, stressing about the affordability should not be an issue. Rationing insulin and supplies should never need to happen.

I wish you all had the chance to meet Alec. He was the most loving, caring, goofy, compassionate, adventurous, generous and persistent young man. He had a love of life and adventure. He was not the type to just sit around and chill unless it was when he was camping or hanging out a bon fire. He loved the outdoors and would often would be found camping or hiking, fishing, boating, or throwing an impromptu BBQ when he had a day off from his busy work schedule. He loved music so he was always looking for a concert or performance to attend. He had a great love of sports. He played baseball, basketball and football all through high school and was a regular at Minnesota Vikings football games, Twins baseball games and the Minnesota Wild hockey games.

Alec loved to travel. He enjoyed seeing new places and experiencing different cultures. He fell in love with Caribbean islands and had a mission to visit each of the 25 islands. Unfortunately, he only made it to 7 islands. Most of Alec’s friends referred to Alec as Big Al. He had a massive growth spurt in high school and by his sophomore year was 6’4. He was a big old teddy bear. Alec always had a smile on his face – it was a goofy grin of a smile – and he was always handing out hugs. His hugs are one of the things I miss the most.

Alec is missed by so many, his family, his huge circle of friends and his daughter Savannah, who is now 5 years old. My youngest son, Jamisen, is 14 and he looked up to his big brother. Alec was his idol, Alec was his everything. My life forever changed on June 27, 2017.

I wish I could be there with you all for the conference but I feel like I really need to be with my family and close friends during this difficult day. I admire you all so much for taking on this battle, for dedicating so much time and energy to the cause. I look up to so many of you, I take so much knowledge from you and use it to fuel my fight. I hope that this conference gives you more tools and resources to prepare for the battle and ultimately to win this fight. We need to stand up and fight the greed and the profiteering of big pharma. I vow to continue sharing Alec’s story and to continue to fight to ensure we achieve our goal of access to affordable insulin for everyone with type 1 diabetes. #insulin4all.

 

Elizabeth Snouffer is Editor of Diabetes Voice


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