Hannah lost her mom to diabetes complications.

Hannah, Falls Church, Virginia

I lost my mother to diabetes complications when she was 45 and I was 16. This is a speech I gave on behalf of then House Minority Leader Nancy Pelosi and the Democrats in Congress to protect the Affordable Care Act.

Good morning. I’m Hannah Crabtree and I live in Arlington, Virginia. I’m a person with type 1 diabetes and a patient advocate with the #Insulin4All movement. I have had type 1 diabetes since I was 4 years old. Growing up with diabetes is tough for any child but, at least for a while, I felt lucky that I didn’t have to go through it alone. My mom, Nancy Crabtree, also had type 1 diabetes.

Throughout my childhood, our family suffered because of discrimination against people with pre-existing conditions in the days before the Affordable Care Act. During a trip to visit our grandparents in the late 1990s, my mom got sick and had to be hospitalized for diabetes ketoacidosis, a life-threatening condition occurring when there isn’t enough insulin in your body. She risked her life by putting off treatment for several days, as she was subject to a coverage gap and was only days away from being able to be covered under my dad’s insurance plan. When the hospital called to collect on their bill, she had a check slated for our family’s yearly property taxes that she used to settle the hospital bill. It saved our family hundreds of dollars but because of this, we were behind on property taxes for 10 years.

My mom was savvy like this and ran our household budget efficiently. But, money was often tight and she constantly worried. She suffered from depression, which went undiagnosed and felt as if we could only afford to take care of one person with diabetes in our family. She rarely had an insulin prescription of her own – she would survive off of whatever was leftover in between my refills. Only I would see the doctor. Without having the insulin, mental health care and tools she needed to take care of her diabetes in the years before the Affordable Care Act, she slowly went blind. From there, came frequent hospitalizations for dehydration and a final diagnosis of renal failure. On Thanksgiving 2006, when I was 16 years old, she passed away from a silent heart attack. She was 45.

A few years later and people with diabetes and others with pre-existing conditions can no longer be discriminated against when getting health care coverage because of the Affordable Care Act. But, people with diabetes are now grappling with the high prices of insulin. If I had to buy a vial of insulin out of pocket, it would cost me $350 at a retail pharmacy and last me two weeks. All humans need insulin to survive but people with type 1 diabetes do not have bodies that produce it on their own. Without insulin, we die quickly and painfully. Without sufficient amounts of insulin, we suffer long term, often deadly consequences. Since 1996, the list price of insulin has increased 1200% from $21 a vial to $275 a vial with no changes to the insulin itself. I often thought my mom’s story was an anomaly. That we simply “fell through the cracks” in the days before the Affordable Care Act. In reality, the price of insulin coupled with no universal guarantee of coverage is killing people and destroying many more families today.

The GOP believes drug prices don’t matter. They’re like the sticker price on a car that no one pays. But, many people with diabetes do pay that sticker price for insulin by way of being uninsured, on high deductible plans, subject to the Medicare donut hole or because life happens. When we need insulin or we die, sometimes that means having to pay for insulin out of pocket. If the Affordable Care Act is repealed, 6 million Americans dependent on insulin could be uninsurable and will have to pay hundreds to thousands of dollars a month to live. We need to focus on protecting people with diabetes and others with pre-existing conditions. We must prevent the dismantling of the Affordable Care Act, work towards universal coverage and lower prescription drug prices. Before the Affordable Care Act, type 1 diabetes killed my mom. Save me from the same fate.