GSDM Professor Testifies in Support of Rare Genetic Craniofacial Disease Insurance Coverage

 

As of 2023, Dr. Yoshiyuki Mochida, GSDM clinical professor of molecular & cell biology, has testified at public hearings five times–both in person and via written testimony–in support of Massachusetts legislation that would guarantee insurance coverage for patients diagnosed with AI, DI, and ED. (Photo credit: Dan Bomba, GSDM.)

Rest will come once there is change—that’s the philosophy that drives Dr. Yoshiyuki Mochida, GSDM clinical professor of molecular & cell biology, to continue his advocacy for Massachusetts residents with rare genetic craniofacial conditions.

In Massachusetts, many residents with these conditions are unable to get insurance coverage, as right now, cleft lip and cleft palate is the only craniofacial disorder for which medical insurance covers medically necessary treatment. Mochida has been working to change this for years, as he believes that all craniofacial disorders, including amelogenesis imperfecta (AI), dentinogenesis imperfecta (DI), and ectodermal dysplasia (ED), should be covered.

“I consider it as a life work until I see the law is changed to support those people with rare dental diseases,” Mochida said.

As of 2023, he has testified at public hearings five times–both in person and via written testimony–in support of Massachusetts legislation that would guarantee insurance coverage for patients diagnosed with AI, DI, and ED. (Note: Mochida was testifying as an individual, not as a representative of or on behalf of GSDM.)

The proposed legislation states that insurance carriers in the Commonwealth of Massachusetts must cover medically necessary care and treatment of craniofacial disorders, including AI, DI, and ED. Currently, patients diagnosed with these rare genetic craniofacial conditions fall into an “insurance loophole,” with treatment covered by neither dental nor medical insurance, Mochida said.

“People consider genetic diseases [as] more like a medical issue, [thinking] medical insurance should cover it, but since their treatment is dental-based, medical insurers deny it because it’s dental treatment,” Mochida said. “Now, patients go to dental insurance and the dental insurance says it’s a genetic disease, so they deny it.”

According to Mochida, proper diagnosis and treatment of rare genetic craniofacial conditions are necessary for oral and facial functions. Individuals with genetic craniofacial conditions can experience excruciating pain from their teeth and lose normal chewing functionality. To prevent these conditions from advancing in severity, it’s vital to diagnose and treat patients as early as possible.

Patients with genetic craniofacial conditions often require extensive dental interventions—from crowns to full-mouth reconstructions—and without insurance coverage, many of these patients simply can’t afford the treatment. Compounding the financial burden, these treatments typically need to be repeated due to continual crown breakage and infection from weak roots and periodontal disease.

“On the basis of rarity, sometimes people are not really aware of these disorders,” Mochida said. “These deformities are inside of the mouth, so it’s invisible. If it’s more on the outside or the surface, people can recognize it. But genetic disease that affects only the oral cavity, unless they smile, people do not recognize, and these patients do not really like to smile.”

Mochida testified most recently in September 2023. The legislation is currently in the deliberation process; If it is approved, Mochida said it will move to further rounds of deliberations in front of a new committee.

For now, Mochida said he will continue being a champion for those diagnosed with a rare disease in any way he can. In the classroom, he encourages his students to think beyond the teeth they are treating, and remember those teeth are connected to a human, who may have struggles that go beyond the dental chair.

“Treating the patient is important, but so is recognizing what [problems] they may have,” Mochida said. “Mostly, those problems are unspoken because their treatment itself is the job. But we really have to understand the patient perspective.”

 

By Rachel Grace Philipson