Up until recently, years of speech therapy, patience and love powered little Carson Rubin past his disability.
He could do everything his 5-year-old peers could, but it was hard to ignore the fact that he was always one step behind.
“He couldn’t learn in a group setting,” said his mother, Shay Rubin of Monroe. “He followed the visual cues of his classmates. He stood to line up to go outside because his friends stood, not because he heard his teacher’s instructions. He clapped his hands for the same reason.”
Carson was born with a condition that causes him to hear heavy and even deafening static.
“That’ll soon change,” Shay Rubin said. Carson is scheduled to receive hard-won cochlear implants, an electronic device that will stimulate his auditory nerve and help him recognize sounds.
After initially rejecting the Rubins’ request to cover the implants, Coventry Health Care of Georgia reversed its decision last week, extending coverage to not only Carson but other policy holders in the state of Georgia.
Kristine Grow, a spokeswoman for Coventry, said that, until very recently, small group policies in Georgia have not covered cochlear implants.
“We understand that policies have shifted, and as a result, we will make a similar change to our policies,” Grow said. “Coventry will cover cochlear implants for our commercial group members as of April 1.”
According to the U.S. Food and Drug Administration, more than 90 percent of commercial health plans in the U.S. cover cochlear implant surgery. Coventry was in that small percentage of insurers that didn’t, despite having been acquired last year by Aetna, a company that does cover the surgery.
The insurer notified the Rubins of the change two weeks ago.
“I was just trying to breathe,” Shay Rubin said of when she got the news. “Obviously, we’re very excited for our own son, but we’re also very excited this could change things for other people who need cochlear implants as well.”
Although estimates vary, several hundred children receive cochlear implants in the United States each year, said Dr. Brian Herrmann, the pediatric otolaryngologist who will perform Carson’s surgery at Children’s Healthcare of Atlanta at Scottish Rite. Nationally, roughly 42,600 adults and 28,400 children have received cochlear implants.
“Currently, cochlear implantation represents the best option available to help children with auditory neuropathy, like Carson, become listening speaking communicators,” Herrmann said. “Auditory neuropathy distorts any sound that is heard, and hearing aids often only amplify the distortion, limiting their usefulness with this type of hearing impairment. Cochlear implants are superior to restoring both clarity and volume of sound to children like Carson. This why it could make a huge difference for him.”
When she and Carson’s dad, Brian, learned their son might benefit from cochlear implants, Shay Rubin said they hesitated at first because it would require major surgery. When they decided it was unfair to Carson to have to struggle to hear and that, without the implants, he’d likely fall further behind academically and socially, they forged ahead.
That’s when the unexpected happened. Coventry refused to cover the surgery.
Shay Rubin said they appealed the decision. When the couple realized nothing was going to change, they set up a Facebook page, hoping for donations to help cover the cost of Carson’s weekly auditory verbal therapy session.
That was in January. In February, they launched a “let 5-year-old Carson hear” campaign on Change.org, an online petition platform with more than 25 million users in 150 countries.
“We were going to fight for our son to hear,” Shay Rubin said.
Within a month, the couple had collected 111,000 signatures. When local news station WSB aired their story, their fight became a national cause.
“That put enough pressure on Coventry to change its policy,” Shay Rubin said.
Jon Perri, Deputy Director at Change.org, said families like the Rubins are increasingly turning to the website to challenge decisions made by insurance companies that impact their families.
“Shay Rubin’s campaign on Change.org isn’t just helping Carson. It’s resulting in a statewide policy change that will make a difference for other families facing the same dilemma,” he said. “It’s just one of thousands of examples of Change.org petitions being used to get families the medical coverage they need.”
Shay Rubin said she was disappointed, however, to learn the change was only for policy holders in Georgia and Utah, not the 23 other states where the insurer does business.
Grow said Conventry is re-evaluating its policies in other states, but “Cochlear implants will likely be among the “essential health benefits” defined by many states under the Affordable Care Act.
“In states where Coventry operates and cochlear implants will be an EHB, certainly we will cover cochlear implants in our policies,”Grow said.
Carson Rubin, meanwhile, is scheduled to receive his first implant April 19 at Children’s healthcare of Atlanta, Scottish Rite.
“Now we get to be nervous about the surgery,” Shay Rubin said. “For the longest time, we felt like were treading water. Now it’s real.”