Breakthrough T1D’s Impact to Me

Most children are asked to share crayons, pretzels, or stickers. I, however, was asked to share insulin. The 12:10 bell blared signifying my classmates’ lunch time and signifying my time to “shoot up.” I grabbed Alex and we made our way to the nurse. Alex was my Diabestie–defined as a best friend who also has Type 1 Diabetes. Every day, I came to school strapped with two water bottles to combat our HIGH blood sugars. Every day, she’d come to school strapped with a bag of Skittles to lay fire to our LOW blood sugars.

On the 12th of February, I recorded a third tally in my orange bullet journal. This tally marked her absence and the fact that I was going on three days without Skittles. By five tally marks, Friday, I resorted to the M&M’s left over from Halloween and began to panic. By six tally marks, Monday, my panic was put to a pause. The intercom crackled. A tremor in the principal’s voice as she spoke, each word more haunting than the last. My vision blackened as I stood in the main hall and felt my body turn cold, slowly sliding to the ground, powerless to move and yet powerless to stand upright. My diabestie is gone. I shared my insulin due to love, while she asked for insulin due to lack (it was either my insulin or forcing her sugars above 400 to get free insulin from the emergency room).

By tenth grade, I had amassed 1,811 tally marks. When a child dies, the question is always: Who’s responsible? Yet, in this case, the answer was not a who, but a what. There existed no one to be condemned in our courts because the killer of Alex was The Hatch-Waxman Act. The world had allowed a piece of paper to shatter 1.3 million lives and counting. However, I wasn’t the world; I was Layla, and I wouldn’t allow one more life to be destroyed.

At 3:33 A.M., I sat illuminated by a solitary dim light overhead, searching organizations and companies that advocated for anything related to diabetes. I sent fifty-three emails over the course of four days. I took out my heart, showed how it was bleeding, and begged them to suture it up…no one responded. After a month and three days, I got my first and only response from the Juvenile Diabetes Research Foundation. They directed me and my resume to their Children’s Congress. If accepted, I could have a chance to stand on Capitol Hill face to face with senators and advocate for a new piece of paper, one that would have saved Alex: The Affordable Insulin Now Act. As I sealed the envelope with my application, tears welled up in my eyes. I attached a photograph of Alex and me to my application–one of the last tangible memories of us together.

After two months, I walked to the mailbox and my body began to shake as I read the words, “We are pleased to inform you…” The next day, I began mailing handwritten letters to United States senators requesting to meet. I spent weeks in preparation highlighting thousands of sheets of paper, annotating legislation, and making quizlets of the statistics: 382 million people…expected to reach 592 million by 2035…affects 1 in 400 children. The numbers danced in my head, and my drive chased them.

On July 10th, I arrived on Capitol Hill, palms drenched as I gripped my legal pad. I had dreamt my way up so far, but now that it was a reality, my body froze in fear. I slid my headphones out of my bag and played my hype song: “Suavemente” by Elvis Crespo. Feeling the beat in my footsteps and Alex’s photo in my pocket, my confidence reappeared–I knew I had an impeccable case. I boogied my way up the 365 steps, and as I walked into the United States Capitol Building, I stopped for a second, looked down at my gigantic briefcase full of research, and dropped it. I shouted, “Mom, will you grab this? I won’t be needing it.” She looked at me with panicked eyes, asking why I, the #4 debater in Texas, would ever walk into a meeting with no prep. I just ran and hugged her.

A statistic never changed the world. Every single member of Congress can find those same numbers on Google.com, but what they can’t find is this: the face of a beautiful girl gone too soon. I pulled out the photo of Alex and I and handed it to Senator Ted Cruz. “This is Alex, one of the millions shot by the gun that is insulin price gouging, and I’m the girl she passed her Skittles to. I, we, could really use your help.”

Effective January 1, 2023, out-of-pocket costs for insulin under Medicare Part D were capped. Effective July 1, 2023, out-of-pocket costs for insulin under Medicare Part B were capped. We had done it–all five representatives JDRF and I had spoken with supported the life-saving legislation. That night, I drew my final tally mark in my orange bullet journal and popped a Skittle, knowing I had just slayed an invisible monster.

Breakthrough T1D’s Impact to Me

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