Ohio dentists go to DC to advocate for patients

For every 10,000 births in the world, seven babies are born with a condition known as ectodermal dysplasia. The congenital disorder can affect the hair, nails, sweat glands and teeth. Children with ectodermal dysplasia may have malformed or missing teeth or, in severe cases, no teeth at all. Similarly, children born with cleft lip or palate also face problems with their teeth and jaws.

To solve this, specialized dental care is needed. It can be extensive, said Ana Mercado, an associate clinical professor at The Ohio State University College of Dentistry and craniofacial orthodontist at Nationwide Children’s Hospital. However, the treatment is not only cosmetic.

“For the patients we treat, there is a medical necessity,” she said. “And it also affects their pockets because the treatment can be so expensive. Then it’s a financial issue for these families.”

Mercado and her colleague Lisa Knobloch, professor and vice chair of the Division of Restorative and Prosthetic Dentistry at Ohio State, traveled to Washington, DC, last month to advocate on behalf of families facing these medical and financial barriers.

As written, ELSA, or the Lasting Smiles Insurance Act, “would require all private insurance groups and individual health care plans to cover medically necessary services resulting from congenital anomalies. This coverage would include services and procedures for any missing or abnormal body part necessary to achieve normal body function, including teeth.

It was the first advocacy trip for both women, who work together at the National Ectodermal Dysplasia Foundation’s Ohio-based dental treatment center, one of only 23 in the country.

“I felt proud to advocate for our patients,” Knobloch said. “It made me feel like I was doing something for the patients we know and love, something that will hopefully provide them with some financial relief down the road.”

There was an unexpected benefit to the advocacy work: a greater understanding of the legislative process.

“I think if you’re involved in advocacy, you know what to answer (when families ask questions). You know how to explain,” Mercado said. “You don’t hold back. I can tell them what’s going on in Ohio, I can tell them about the federal bill. I can be a source of information.”

ELSA was approved by the House of Representatives last year with a bipartisan majority. It was not voted on by the Senate before a new session was held this year, so a new vote is needed. Still, Knobloch and Mercado hope the act will be signed into law.

“You owe it to the patients (to advocate for ELSA),” Mercado said. In Washington, she met a father and daughter who both suffer from ectodermal dysplasia. The condition often runs in families, she said.

“He’s paid a lot of money for his dentures and he has to keep paying because they’re broken,” she said. “But he is there for his daughter, who is missing teeth. So we continue to try (to pass the act). We may miss the boat now, but we’re doing it for their daughter, their grandchildren, the generations to come.”

Patients can’t afford not to advocate for themselves, Mercado said. And clinicians have powerful stories to tell in support of their patients.

“A full set of dental implants can cost up to $56,000,” Knobloch said. Patients are often young when they start treatment and there is routine maintenance that needs to be done throughout their lives. In addition, it is not uncommon for teeth to need repairs or even replacement on a regular basis. While the Ohio State Dental Treatment Center may reduce some costs, increased insurance coverage would make a difference in many lives.

“Sometimes we have patients who choose dentures over implants because of the cost,” Knobloch said. “Living your whole life with dentures because of the cost? I would not consider that to be the standard of care that we want someone to have.”

ELSA has until January 2025 to be approved by this Congress. Mercado and Knobloch plan to return to Washington if asked.

“There are currently 6,000 bills before the House and 4,000 before the Senate,” Knobloch said. “We are one of those bills. … So, as a lawyer, you’re hoping to get their attention and make them understand the importance of what you’re doing. When these things come up for a vote, we want them to remember us.”

For more information about ELSA, visit the NFED website: https://www.nfed.org/get-involved/advocate/ensuring-lasting-smiles-act/