Ohio State Dentists Make a Beeline to Washington to Champion Patient Advocacy
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 dysplasias can have malformed or missing teeth or, in severe cases, no teeth at all. Similarly, children born with a cleft lip or palate also face problems with their teeth and jaws.
To remedy this, specialized dental care is needed. It can be extensive, said Ana Mercado, a clinical associate professor at The Ohio State University College of Dentistry and craniofacial orthodontist at Nationwide Children’s Hospital. The treatment is not just cosmetic, though.
“For the patients we treat, there’s a medical necessity,” she said. “And it impacts their pockets, too, because 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, D.C., last month to advocate on behalf of families facing these medical and financial hurdles.
As written, ELSA, or the Ensuring Lasting Smiles Act, “would require all private insurance group and individual health care plans to cover medically necessary services resulting from congenital abnormalities. That coverage would include services and procedures for any missing or abnormal body part necessary to achieve normal body function, including teeth.”
This was the first advocacy trip for both women, who work together at the Ohio State-based Ohio dental treatment center for the National Foundation for Ectodermal Dysplasia, one of just 23 in the country.
“I felt proud to be advocating for our patients,” Knobloch said. “It made me feel like I was doing something for the patients that we know and love, something that will hopefully provide them some financial relief down the road.”
There was an unexpected benefit for the advocacy work: a greater understanding of the legislative process.
“I feel that if you’re involved in advocacy, you know what to answer [when families ask questions]. You know how to explain,” Mercado said. “You’re not aloof. I can tell them what’s happening in Ohio, I can tell them about the federal bill. I can be a source of information.”
ELSA was passed by the House of Representatives last year by a bipartisan majority. It was not voted on by the Senate before a new session was seated this year, so a new vote is needed. Still, Knobloch and Mercado are hopeful that 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 dysplasias. 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’s there for his daughter, who is missing teeth. So, we keep trying [to get the act passed]. We may miss the boat now but we’re doing it for their daughter, their grandchildren, future generations.”
Patients cannot 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 as much as $56,000,” Knobloch said. Patients are often young when they begin treatment and there is routine maintenance that needs to be performed throughout their lives. In addition, it is not unusual for the teeth to need repairs or to even be replaced regularly. While the dental treatment center at Ohio State can lower some costs, increased insurance coverage would make a difference in many lives.
“We sometimes get patients who choose dentures over implants because of the cost,” Knobloch said. “To live 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 passed by this Congress. Mercado and Knobloch plan on going back to Washington if they’re asked.
“There are currently 6,000 bills in front of the House and 4,000 in front of the Senate,” Knobloch said. “We’re one of those bills. … So as an advocate, you’re hoping to get their attention and make them understand the importance of what you’re doing. When these things come up to a vote, we want them to remember us.”