GUIDING HEALTH CARE REFORM: Thomas Chappuis of Sharon and Adrianne Musto of Mansfield didn't fully realize what they were getting themselves into. It was eight years ago when these parents of children born with cleft palates launched a grass-roots effort to enact a law mandating insurance coverage for corrective surgery for cleft lip and cleft palate, which occur in about one in 800 births.
"I didn't know it would take that long. It was a learning experience," said Chappuis, whose son, Tom, is a senior at Sharon High School and required out-of-pocket costs for years of corrective surgery. "But now it's done and will help generations of other families."
With the help of state Representative Louis Kafka, a Democrat from Stoughton, the legislation requiring coverage was signed recently by Governor Deval Patrick and goes into effect Jan. 1. Coverage will provide benefits for all necessary surgery, medical and dental care for patients, including speech therapy, audiology, nutrition services, orthodontics, and prosthetics.
"It took that amount of time to get the data right, and to make sure passing a law was sound and made sense," Musto said.
Since the birth of his son, who had both a cleft lip and palate, Chappuis said, he got the run-around from his insurance provider.
"At first, they said coverage is provided because it's a birth defect, but as my son got older, they said it's not covered, that it was dental," he said. "But the dental people said, 'No, it's medical,' and they kept ping-ponging us back and forth."
That's when he approached Kafka for his help, and soon thereafter, Musto joined the fight.
"She's a force to be reckoned with," Chappuis said of Musto. "She did a superb job, and with her effort, Lou's effort, and whatever I could do, together it all worked."
Musto said it can cost up to $50,000 for a corrective procedure, and that she knows of families who took out second mortgages or lines of credit to pay for the expenses.
She said the new law will provide for those expenses and cost next to nothing for the policyholders. According to the state Division of Health Care Finance and Policy, the law will add 24 cents a year to an insurance policy premium.
"When we were lobbying, Adrianne would give people a quarter and say, 'This is what it will cost you a year for this law,' " Chappuis said with a laugh. "She was just incredible."
Many people testified on behalf of the law at State House hearings, from medical professionals to children born with a cleft palate — including Chappuis's son.
"When those kids testified, there wasn't a dry eye in the house," Musto said. "All those kids deserve a tremendous amount of credit for this, to get up and pour their hearts out like that. The committee was just stunned, listening to them. Many didn't know this wasn't covered by insurance."
The law provides coverage for children up to 18. Chappuis's son is beyond the coverage age, but that matters little, he said.
"When I did this, I knew it probably wouldn't help us," he said. "But that wasn't the goal. The goal was to make sure this didn't happen to someone else."
"It fixed something that was broken, it was doing the right thing," Musto said. "Keep in mind, the end user is these kids. We're not as huge a movement as some others, but this is a common birth defect. It will make a huge difference in the lives of these families."
The law makes Massachusetts the 20th in the country requiring cleft lip and palate insurance coverage. For more information, visit the Brookline-based Foundation for Faces of Children at www.facesofchildren.org.
MARION AUTHOR PUBLISHES BOOK: Peter Stone of Marion has released "Waltzes With Giants: The Twilight Journey of the North Atlantic Right Whale,'' an illustrated book with Stone's oil paintings and narrative.
Paul E. Kandarian can be reached at Kandarian@globe.com.