On August 6, Governor Duval Patrick signed a law mandating insurance coverage for treatment of cleft lip and/or palate for children under the age of 18. A ceremonial signing, attended by supporters, was held at the State House on October 1.

The legislation’s passage was in large part due to the persistent grassroots organizing efforts of FFC board member Adrianne Musto, whose son Tony was born with a severe cleft in his lip and gum ridge, the bony structure that anchors the teeth. After facing her own frustrations with insurance denials, she took her fight for coverage to the Massachusetts State House.

She joined forces with Tom Chappuis, the parent of a child with cleft lip and pal- ate, and approached Rep. Louis Kafka of Stoughton for his support. In May 2007, Rep. Kafka introduced a bill to guarantee insurance coverage for all medically necessary treatment for cleft lip and cleft palate. Adrianne then enlisted the support FFC families, patients, and health care professionals at the Craniofacial Centre at Boston Children’s Hospital, who testified in letters and at the State House on behalf of the bill.

The new law, which will take effect January 1, 2013, provides benefits for all necessary medical, surgical, and dental care including speech therapy, audiology, nutrition services, orthodontics, and prosthetics (replacement of missing teeth). The long- sought legislation makes Massachusetts the 20th state in the country to enact a law requiring cleft lip and palate coverage.

“The law will lift a huge financial burden from parents and alleviate many of the stresses placed on families,” says parent advocate Musto. “Every procedure is major for our kids. Eliminating the insurance battle will help parents focus on what is important, and that is their child.”

“By mandating coverage for all necessary treatment for cleft lip and palate between birth and age 18, the new law will help ensure that parents can afford to give their children the proper care,” adds Mairi Fuller, director of FFC and the mother of a child with cleft lip and palate.

Depending on the treatments required, the cost of surgical and dental care for children with cleft lip and/or palate can range from $50,000 to $200,000. The cost of the new law, calculated by the Division of Health Care Finance and Policy, will be two cents for each member insured per month or less than a quarter per year. Some state insurers, including Harvard Pilgrim Health Care, Blue Cross and Blue Shield of Massachusetts, and MassHealth, have already begun to provide coverage for these services.

What You Need to Know

The new law applies to all HMO’s, PPO’s, and health insurance providers in Massachusetts but not to self-insured companies, which pay employee claims directly.

Parents with health insurance will still be responsible for co-pays and deductibles.

Parents must still received prior authorization for treatment if required by their insurance company. Treatment must be deemed “medically necessary”.
The new law only applies to children under age 18.
The guarantee of coverage starts on January 1, 2015 and is not retroactive.