Ensuring Lasting Smiles Act: Why It Matters
Being brave and bold — by building relationships. Taking a stand — with kindness. Demanding meaningful change — through openheartedness.
Members of the coalition working to pass the bipartisan Ensuring Lasting Smiles Act (“ELSA”) through the US Congress, including Smile Train, call it “mindful advocacy.” This approach helped the bill pass the US House of Representatives in 2022 with overwhelming support. Unfortunately, the bill never reached a full vote in the Senate. But for thousands of children and families across the country, the fight is far from over.
Every year, children with clefts and other congenital craniofacial conditions are denied essential care by insurance companies — from orthodontics and speech therapy to life-changing craniofacial surgery. Even when doctors confirm these treatments are medically necessary, families are often left battling insurers instead of focusing on their child’s health.
That’s why the Ensuring Lasting Smiles Act (S. 1677/H.R. 3277) is critical. Introduced by Sens. Tammy Baldwin (D-WI) and Joni Ernst (R-IA) and Reps. Kim Schrier, MD (D-WA) and Neal P. Dunn, MD (R-FL), the bill would require private insurers to cover all medically necessary craniofacial treatments — ensuring doctors, not insurance companies, decide what care children need to grow, speak, and thrive.
A Personal Story: Tiffiny Tyler
Utah mom and cleft community advocate Tiffiny Tyler, a member of Smile Train’s Cleft Community Advisory Council, knows these struggles firsthand.
At age five, Tiffiny’s cleft bone graft failed. When her parents tried to get another procedure covered, their insurance denied it as “not medically necessary.” The family fought for nine years before insurers finally approved the surgery. But by then, permanent damage had been done.
Decades later, when Tiffiny’s own daughter was born with a cleft, little had changed. In 2023, after her daughter underwent surgery, the family received a $7,000 bill stating coverage had been rescinded. Despite appeals from their doctor, the claim was denied again and again until the state’s insurance department overturned it — a full year later.
“ELSA will ensure we can get the medical care and the coverage that we need because it’s not cosmetic. It’s medically necessary,” Tiffiny said. “We deserve to have our quality of life improved, not just managed.”
Her story reflects the reality for countless families. It’s proof that lasting change is urgently needed.
A Month of Advocacy for ELSA
This past July, National Cleft Awareness Month, Smile Train organized a 31-day push to spotlight the bill and grow momentum.
Key Highlights
- Launch of the ELSA Advocacy Committee: On July 10, 36 participants joined the inaugural meeting — half of them new to Smile Train’s community.
- 48-Hour Outreach Campaign: Between July 15–16, advocates sent 1,533 emails to their legislators using Smile Train’s easy online tool
- ELSA Advocacy Event: On July 16, 55 advocates gathered for updates and strategy. Speakers included Becky Abbott (Director, Research at the National Foundation for Eectodermal Dysplasias [NFED] and Head of the ELSA Coalition), Tiffiny Tyler, and Luci Capo Rome.
- Social Video Testimonials: Cleft Community Advisory Council members Monica Bush, Steph Heintz, and Jessica Jones shared emotional video messages about why ELSA matters.
- Cleft Con Orlando: Our annual midsummer gathering featured a session titled Navigating Insurance and Advocacy – Empowering Families in the Cleft Journey, providing families with practical tools to fight insurance denials and join the legislative movement.
November’s ELSA Day on the Hill
The energy our advocates built up in July has kept the push for ELSA going full speed ahead over the months since. On November 4, 30 Smile Train delegates participated in the National Foundation for Ectodermal Dysplasias’ ELSA Day on the Hill alongside more than 120 advocates from the broader congenital anomalies community. Our Smile Train representatives met with legislators, shared personal stories, and urged their lawmakers to support this critical legislation.
How You Can Help Pass ELSA
The Ensuring Lasting Smiles Act can become law, but it will take all of us. Every email, every call, and every story shared makes a difference.
Contact your representatives today and urge them to support the Ensuring Lasting Smiles Act. No family should ever be forced to choose between financial ruin and their child’s health.