Angie and Mark King knew life would be a struggle when disease suddenly claimed the last of their 3-year-old daughter's limited hearing.
But the Celina, Ohio, couple never imagined their insurance provider would deny coverage for a cochlear implant. As they saw it, the titanium device designed to improve speech recognition was their daughter's only shot at life in a hearing world.
Benicorp Insurance Co. denied coverage, first calling it a hearing aid, then a prosthetic - neither of which it would pay for.
"I was devastated," said 36-year-old Angie King. "My daughter was deaf and needed a medical procedure immediately. It was essential. They chose to deny my daughter the right to hear."
The denial launched the couple on a journey that would take them all the way to Capitol Hill, prompt a federal lawsuit and raise questions about coverage for the small, high-tech devices.
Advocates for the cochlear implants have long tussled with Medicaid and Medicare because they say reimbursements remain thousands of dollars lower than the cost of surgery. More recently, they say, an increasing number of private insurance companies are denying coverage outright. Officials at Indianapolis-based Benicorp did not return calls from The Associated Press requesting comment on the King case.
"Ultimately, this is about the way society views hearing," said Donna Sorkin, vice president of consumer affairs for Cochlear Americas, a manufacturer. "Being deaf is not going to kill you, so the insurance company does not view this as ... necessary."
Meanwhile, the devices, in use since 1978, have grown more efficient and more popular over the years, giving thousands of deaf people a chance to hear the voices of their loved ones.
"Just like our desktop and laptop computers, cochlear implants have gotten smaller, faster and smarter, and more like the real ear in terms of the way they process sound," said Dr. John Niparko, director of ear surgery in the department of otolaryngology at
Johns Hopkins Hospital in Baltimore. "They enable sensitive hearing even in profound deafness."
In the past, cochlear implants were met with resistance from deaf activists who argued the mechanisms were an affront to their culture because they emphasized oral communication. In the last 10 years, however, the deaf community has become more accepting.
"There is a much more positive message from the deaf community than (there was) three years ago," said Heather Whitestone McCallum, Miss America 1995, who recently got the implant at Johns Hopkins. "I see more and more deaf people supporting cochlear implants now than when I was Miss America."
Despite increasing popularity, low reimbursement levels have forced eight hospitals nationwide to shut down cochlear programs because of the cost of subsidizing the implants, said Brenda March, vice president of customer service for Cochlear Americas.
Other hospitals put children on waiting lists to save money by rationing services, Sorkin said.
"To put a child on a waiting list for a cochlear implant breaks my heart," she said. "We're treating poor families differently and that's wrong."
The cost of a cochlear implant surgery is between $30,000 and $40,000, according to Cochlear Americas. The reimbursement level recently set by Centers for Medicare & Medicaid Services (CMS) is $19,173, a number CMS says is a fair representation of the cost a hospital incurs when a device is implanted.
"I've spent hundreds of hours on this ... and I think we got it right," said Tom Scully, CMS administrator.
About 60,000 cochlear implant surgeries have been performed worldwide since the late 1970s, about half in North America and many in Japan and western Europe. Thanks to education and early screening, more than half the recipients in the United States are children.
Currently, about 45,000 children in the United States are eligible for the procedure, but only 9,000 under age 17 have received an implant, Sorkin said.
The Kings, who own a contracting business, paid $50,000 so daughter Erica, now 6, could receive the device. Their second daughter, 4-year-old Jamie, also was born deaf, a mystery to the parents, who have no hearing problems.
By the time Jamie needed surgery, the couple had coverage from Aetna, which "paid everything within 35 days," Angie King said.
Cochlear advocates argue that deaf children who receive the implants will save thousands of dollars in government aid for education and training.
"I saved the state of Ohio a half-million dollars," King said. "That's what it would cost to send my kids to the state school for the deaf."
Now Erica can talk on the phone, participate in classroom discussions and even hear the humming of the refrigerator, King said. She recently qualified for her school's gifted and talented program.
"My kids are doing great," said their mother.
In both girls, the eardrum, bones and structures of the ear are intact, but the tiny hair cells that line the cochlea, the spiral part of the inner ear, are damaged. That prevents the flow of acoustical impulses to the remaining nerve fibers.
The cochlear system the girls use includes a microphone/processor directly behind the ear and a small transmitter attached to the head a couple of inches behind the ear. Implanted under the transmitter is a receiver. Signals are sent to electrodes within the cochlea that stimulate the auditory nerve.
"Without those computers, they can't hear 'Boo,"' said Mark King.
After Benicorp denied coverage for Erica, the couple took their case to federal court in Cincinnati, alleging Benicorp had violated the Americans with Disabilities Act.
On Feb. 12, 2002, the judge ruled against the Kings. Their insurance coverage was through an employer-paid health plan regulated by ERISA, the federal Employee Retirement Income Security Act.
Dan Donnellon, the Kings' attorney, said ERISA provisions made the case a tough one to win.
"The court found that there wasn't evidence in the file that (Benicorp) did this arbitrarily," Donnellon said.
The Kings say they do not plan to appeal. "I've been so exhausted by the whole thing," Angie King said. "I just want my life back."
Despite the loss, the court battle turned the mother into an activist. She has spoken to politicians in Washington and elsewhere to raise awareness about insurance coverage for cochlear implants, and has counseled other families in similar situations.
"This is just losing a battle in a long war," said Mark King. "This is something that's going to be a lifetime thing for us. We've seen the result of having two beautiful children who can hear now."
By Angela Potter