When Murray resident Tiffiny Tyler received a letter from her insurance company denying coverage for her newborn daughter’s cleft treatment, she was stunned. “I was still recovering from giving birth, the bills were starting to come in from labor and delivery and for Kairi’s early treatments,” she recalled. “Her doctor wanted her to have nasal stents to preserve her nasal passageways until surgery at three months. We received the letter that the treatment had been denied as ‘not medically necessary’ and ‘experimental.’ I was so shocked.”

That letter marked the beginning of a years-long struggle for Tiffiny and her daughter, Kairi, both born with clefts, as they fought insurance denials for essential medical care. Now, they are using their experience to push for national change. Earlier this month, the mother-daughter duo returned to Capitol Hill to advocate for the Ensuring Lasting Smiles Act (ELSA)—a bipartisan bill that would require insurance companies to cover medically necessary treatments for congenital anomalies such as cleft lip and palate.

It was their second trip to Washington, D.C., joining Smile Train, the world’s largest cleft-focused organization, and other advocates from across the nation. Their mission: ensure that no family has to face the financial and emotional strain they endured simply to access essential medical care.

Kairi and other young advocates meeting Sen. Tammy Baldwin in Washington, D.C. (Photo courtesy of Tiffiny Tyler)

 Growing up with a cleft herself, Tiffiny said she didn’t fully understand how insurance denials affected her care until she became a mother. “There was a lot of pressure growing up that I needed to have my surgeries done before I turned 18 so that they would be covered,” she said.

Her experience of isolation fueled her determination to create a different reality for her daughter. “I did not have a lot of community growing up,” she said. “I did not meet another person with a cleft lip and/or palate until I was 21. When I was pregnant with Kairi, I knew things needed to change and be better for her.”

Through online support groups and outreach, Tiffiny connected with other parents and eventually became involved with Smile Train’s Cleft Community Advisory Council. This year, she was a featured speaker at Cleft Con, Smile Train’s annual global conference for people affected by clefts. “My biggest message to the cleft community was you are not alone in your advocacy,” she said. “There are people willing to help and support you, but also, no matter how big or small you are, you can advocate.”

For 9-year-old Kairi, advocacy began early. Last year, she joined her mother in D.C. to share her story with lawmakers. “Growing up with a cleft in my life was not that bad,” she said. “Hardly anyone noticed my cleft, and if they did, they never said anything about it. But I had to live with the fact that I was different.”

Her advocacy took on new urgency after experiencing her own denial. “I had a surgery that was pre-approved, and then after the surgery, the insurance company said it was dental and not medically necessary,” she said. “We flew to D.C. to advocate for ELSA last year as well as this year. Why I went to D.C. is because if I went, I could help other people like me.”

This year’s trip, Kairi said, was shorter due to a partial government shutdown. “We only met with Utah’s two senators and one representative,” she said. “I wrote my speech on my own without help. I think the people we met with responded positively, saying that they would talk to the senators or representatives about it. Rep. Burgess Owens is a co-sponsor of ELSA.”

For families like the Tylers, the passage of ELSA could mean an end to years of appeals, denials and financial hardship. “For the cleft community, the biggest treatments that are denied or delayed tend to involve teeth, ears and nose,” Tiffiny said. “If the outside of the nose needs to be reshaped to allow for better airflow, it can be denied as ‘cosmetic.’ For Kairi, she had extra teeth and needed a procedure done. Even though it would help with eating and other procedures later in life, they denied it after the procedure was done. It took a year to resolve or pay $7,000.”

Tiffiny and Kairi at the U.S. Capitol before meeting with lawmakers during their 2025 advocacy trip. (Photo courtesy of Tiffiny Tyler)

ELSA, she said, would ensure that “insurance companies would not get to say that improving a child’s airflow is cosmetic or that a procedure to help a person eat due to a medical condition is a dental issue. This bill puts the power back where it should be, in the hands of a person’s doctor or medical professional.”

Utah has one of the highest rates of babies born with clefts in the nation—one in every 450 births, compared to the national average of one in 1,000. “For Utah, this bill would make a huge difference,” Tiffiny said. “It would guarantee that no matter which private insurance a person has, the medical care related to their congenital anomaly will be covered.”

Advocacy, Tiffiny admits, can be emotionally draining. “The most challenging part is not feeling listened to or receiving difficult feedback,” she said. “It is disheartening to share something so personal with a legislative office and feel as if they would rather be anywhere else. In these moments, there’s the challenge of staying steady and kind. I firmly believe that kindness can make change more than anything else.”

What keeps her motivated, she says, is her daughter. “When progress feels slow, it’s my daughter who keeps me going. She gets so excited—she asks about ELSA all the time. I want things to be better for her and the future. She shouldn’t have to wait nine years for a procedure like I did.”

Kairi hopes her efforts inspire others her age to find their voice. “I want other kids to know what you say matters because a small person can make a big change,” she said. “That they shouldn’t have to fight with insurance to get surgeries approved. That it is OK to be different and stand up for yourself.”

As ELSA continues to move through Congress with bipartisan support, the Tylers plan to keep advocating until the bill becomes law. “When we come together and share our stories, we can make great change,” Tiffiny said.