Twin patients advocate for the Ensuring Lasting Smiles Act
Editor’s note: The ADA is one of 35 organizations supporting the Ensuring Lasting Smiles Act — legislation that would require all private group and individual health plans to cover medically necessary services that repair or restore congenital anomalies. In February, the organizations sent a letter to legislators that they believe the ELSA would positively impact the quality of life for patients with congenital anomalies and also eliminate the existing burdens that prevent access to necessary diagnosis and treatment. The groups pointed out that the Centers for Disease Control and Prevention classifies birth defects as “common, costly, and critical” and reports that one in 33 newborns in the United States is born with a congenital anomaly.
Twins, Kellen and Liam, age 12, were born with a rare condition known as enamel hypoplasia. All of the boys’ baby teeth were affected with this condition and as the adult teeth grew in, the permanent teeth also were severely affected.
In mild cases, hypoplasia can appear as a small pit or dent in the tooth, or a discoloration of excess white, yellow or brown on the teeth. When severe, like in the case of Kellen and Liam’s teeth, the enamel hypoplasia can make the entire tooth appear small and misshaped in addition to discoloration.
The twins and their parents were not only concerned about the aesthetic issues for the children but the boys’ inability to eat and chew. This condition also leads to a higher tendency for dental caries (cavities) when the defects in tooth enamel can result in lesser quantity of enamel than normal teeth.
Only a small portion of dental insurance would cover treatment. It is an expensive fix without coverage, especially for two sets of teeth. Temporary stainless steel caps were placed on the molars so the boys could chew without grinding their molars down. Many dentists were extremely cautious about treatment options due to the severity of the hypoplasia. Now entering the final stages of a permanent fix for the boys, braces are needed to fix their very crooked teeth and overbites (it’s been suggested that they may need surgical intervention but they are trying headgear first) and ultimately caps for every single tooth.
The family has the boys covered under three different insurance plans just to obtain braces. The twins’ father, Ocean Baker explains, “We have been working with dentists to provide the best care we can with the financial capabilities we have, but we are fast approaching an impossible road block, the permanent caps that are expensive, yet required for every single permanent tooth.” The braces are needed to put the caps on correctly afterwards. Their braces and orthodontic therapy are needed for more than cosmetic reasons, as it is difficult to restore teeth that do not have the correct alignment (occlusion) to function.
“Capping all their teeth would cost out of pocket, more than I make in a year but these boys’ teeth will rot out of their mouth if this isn’t done. Not to mention they struggle daily with the fact that their teeth are yellow and brown in color…and you know how cruel kids can be.”
“I can’t fathom how this wouldn’t be covered by medical insurance but basically their pediatrician can’t identify a specific disease that caused this, even though they were born that way, it is categorized as mostly a cosmetic problem, despite the fact that functioning teeth are incredibly important to the general health and well-being of a person,” Mr. Baker explains.
The teen years are almost here for the boys and the Bakers do not want other children to suffer the way they have. There were not many options due to the severe abnormality of the boys’ teeth. The doctors who have treated the Baker twins over the years have tried to treat the deteriorating teeth, but without the insurance coverage, Mr. Baker sadly thinks he denied his boys the care they need because of costs that insurance companies did not deem necessary.
The Ensuring Lasting Smiles Act (S. 560/H.R. 1379) or ELSA, in Congress would help patients with craniofacial anomalies like Liam’s and Kellen’s. ELSA would require all private group and individual health plans to cover medically necessary services resulting from a congenital anomaly or birth defect. Urge your members of Congress to co-sponsor ELSA legislation to help children who are unable to receive the treatment they need.