My son Allen was diagnosed with type 1 diabetes at the age of seven. I had always thought of him as my miracle child, due to his health issues since birth. He was a great kid, who loved to help other people, and to do what he could. He had a good and genuine heart despite the difficult hand he was given.
He was on Social Security insurance until he turned 18. That’s when the problems started. He had to reapply as an adult for Social Security benefits. It was an intensive process and he was denied. They said he wasn’t ‘‘sick enough’’ to get benefits, but he couldn’t hold a job because he had very brittle diabetes. I couldn’t afford to keep him on my insurance, which broke my heart.
When that happened, we hoarded insulin as much as we could, because we knew what was coming. Allen had to ration when we lost insurance, because the cost was simply too much. When the money started running out, we had to buy the Walmart insulin, and it didn’t work for him. He needed Novolog and Lantus, but we couldn’t afford it.
On May 11, 2018, two days before Mother’s Day, I came home and found him. I watched for 2.5 hours while the paramedics tried to save my kid, but they couldn’t. My son was dead.
Obviously, I have been mad ever since. Allen was 20, young, and had so much of his life ahead of him. He should not have died. We need genuinely supportive healthcare coverage for these kids and everyone who needs it. The healthcare system in the United States works well for the rich, but if you make less than a certain amount, you are out of luck.
The costs add up – for doctor’s appointments, supplies, and care. Someone simply cannot make enough to pay for all of it if they are a middle or low-income person. Why was I forced to have to come up with a minimum of $300 per week to cover all these things for my son as a single mom? I didn't even have health insurance for myself. I gave it up so that I could afford to take care of him, and it still did not work.
I blame big pharma for my son’s death, but I do not just blame big pharma. I also blame the government. Our government is responsible for holding the companies accountable and protecting its citizens.
Now I want to fight. I knew the system was wrong before Allen died. I felt I could not do anything about it, and now I am suffering because of it. I don’t want any other family to go through this. I want kids to be able to spend $10 on a vial of insulin, not $300. No one should have to work multiple jobs and struggle so hard, or ration like Allen did, just to get by.
Allen was always happy, always smiling. He did whatever he could to make me happy. I worked nights and he would come home and have food ready for me. He couldn’t work, so he was on my schedule so that he could help me. He was more worried about me than about anything else. He wanted me to be happy and taken care of. It was us against the world, and when I lost him a huge part of my life was gone.
Since his death I have been very lost, but I am grateful that I’ve found T1International and others who see this injustice for what it is. I have something to fight for, and people to fight with me. Allen wanted to make life easier for people with diabetes, so if I can fight that fight in his memory, that is what I’m going to do.