State Advocacy

Senate Bill 569

Massachusetts Mom Advocates for Law to Mandate Insurance Coverage for Dental Care for Rare Disorder

Beth Pond is a mom on a mission. She has spent the last decade advocating for insurance coverage for the rare condition that affects her two sons and more than 100 others in Massachusetts. The Hubbardston resident and 5 others testified on November 14th to the Joint Committee on Financial Services and urged them to pass Senate Bill 569 which would require health insurance companies to cover dental work for ectodermal dysplasia patients.

Pond is urging the public to join her quest to provide smiles to ED children and adults

"Because the ED syndromes are rare and only affect 119 individuals in the state, we do not have significant lobby power,” Pond said. “I am asking the public for their help. I implore them to write or call their legislator to support Senate Bill No. 569 that would put teeth in the mouths of children and give them the smile they deserve. This is not cosmetic dentistry. They need teeth to eat and speak better."

The ED syndromes are rare disorders affecting the teeth, hair, nails and glands. Affected individuals may have teeth that are missing, misshapened teeth and have defective enamel. Dentures are needed at an early age to improve nutrition, speech, appearance and self-esteem and must be replaced every 18-24 months as the child’s jaw grows, according to Mary K. Richter, executive director of the National Foundation for Ectodermal Dysplasias. Families can expect to spend as much as $100,000 on dental care by the time their child turns 18, she said.

"This law would not increase health care costs exponentially as only 70 of the 119 individuals in Massachusetts have dental care needs due to ectodermal dysplasia," Pond said. "Insurance coverage is provided if a child falls off their bike and knocks out their teeth, but not if a child doesn’t have teeth because of a medical condition they are born with."

Advocating for the new law has been an 8-year battle for Pond and other ED families in Massachusetts. After winning an appeal with her insurance company in 1999 for dental care coverage for her son Beth set out to attain health insurance coverage for all individuals with ED in the state.

Senator Steven Brewer wrote and filed the first bill in 1999 with 45 co-sponsors from both the Senate and House of Representatives. On March 14, 2000, Pond and other families provided emotional testimony to the Joint Committee on Insurance which then unanimously endorsed the bill. The session ended without any movement on the bill. Sen. Brewer has reintroduced the bill each session with no success.

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