HARTFORD – “I’m into Hot Wheels, coin collecting and advocating,” said Saige Merwin, noting that advocating might be an unusual hobby for a 13-year-old but it comes naturally to them. “I figured out that I’m actually not half bad at public speaking,” continued Merwin.

The teen recently spoke out at a public hearing at the Legislative Office Building to enact change. A proposed bill aims to make diabetes treatment and care more affordable. Our interview occurred after what Saige calls a bad night.

“My blood sugar was like a roller coaster,” they said. “Every hour we were waking up to a different alarm, needing to treat it.”

“Diabetes is a very time-consuming disease for the parents and for the kid,” adds Saige’s mom, Samantha who says her child’s type 1 diabetes diagnosis at 17 months old was life-changing. Most years, the family has spent between $5,000 and $9,000 dollars, out of pocket, on necessary equipment and medication.

Saige has no choice to take insulin, without it Saige would die. “Insulin is like our water…..we don’t save for college. We save for his medical expenses when he’s going to be in his twenties,” said Samantha.

But, they believe this move to put price caps in insulin and supplies will make a huge difference. Through the legislative process, the teenager has learned a valuable lesson.

“Kids have a voice, we can change things if we want to, don’t ever underestimate us,” Saige said. In fact, he’s always achieving — running races to raise money for the cause, looking to change the landscape for himself and others.

“He feels like diabetes pushes him further in life and I’m confident that that’s true,” says Samantha.

“I never let it stop me,” added Saige.

The bill to cap insulin costs at $50 in Connecticut has a lot of bipartisan support. It passed a committee vote on Tuesday and will head to the Senate next. The Merwins are hopeful it will get passed before the end of the legislative session.