Brenden's plight

The Titanium Rib Project is being studied and performed at the Santa Rosa Children's Hospital in San Antonio, Texas, by Dr. Robert Campbell. The surgery requires that the ribs be broken to have a titanium rod inserted into the ribs and chest, helping them expand to allow room for the growth of organs, especially the lungs. Every four to six months until the patient reaches age 16, the rod is adjusted for that growth.

The surgery has been performed almost 100 times, mostly on patients with scoliosis, but Brenden's condition is so rare, the surgery has been performed on only one other child with Brenden's exact condition. According to April, she and Rob have been in contact with the boy's family. "That little boy had the surgery when he was 2 and he is now 7 and doing wonderfully," she says.

The Hills were excited to learn about the surgery and its success. Although there are risks associated with any major surgery, the procedure provided the only hope for Brenden to live a normal, full life. But the health insurance company that covers the family, Coventry Health Care of Kansas, soon tempered the Hills' excitement. The company has denied coverage for Brenden's surgery.

Coventry refused a request for an interview for this article, but in a letter signed by Dr. Diana Cokingtin, medical director for Coventry, the company explains its decision:

"Coventry Health Care of Kansas empathizes with any family where a loved one is faced with a serious health situation such as this. However, Coventry has a responsibility to members of our health plans and their employers to provide all our members with affordable health care coverage. Like other health plans, we specifically exclude coverage for experimental treatments, except in very limited situations.

"After reviewing available data, Coventry has determined that there is no clinical evidence at this time that the titanium rib is an effective treatment of spondylothoracic dysplasia and, in accordance with Section 4.16 of Coventry's technology assessment policy regarding experimental procedures, treatments, and supplies, denied the request for coverage. In fact, the sponsors of the Titanium Rib Project, the United States Food and Drug Administrative and Synthese Spine Co., referred to this project as an 'investigational surgical procedure' in literature recently.

"The member's family has been informed of our appeal process and is free to exercise its right to initiate the appeals process. They are encouraged to request an expedited appeal if it is determined that the member faces a life-, limb-, function-threatening, or emergency condition."

The Hills have been told that it is imperative that Brenden have the surgery as soon as possible, and they have filed their appeal. But it is unclear how many appeals Coventry allows or how long even the emergency appeal will take.

"There is already a waiting list for the surgery. One doctor in the entire country is only performing it at one hospital. If Brenden doesn't have this surgery by the time he is 5, it will be too late, because that is when the lungs stop maturing," Rob says.

Publicity about Brenden's plight allowed the Hills to start a fund in Brenden's name to help cover his medical expenses. "The cost of the evaluation for surgery is $8,500, and we have about $10,000 in the fund, so we have enough just for the evaluation and some travel expenses," April says. (Contributions can be sent to The Brenden Hill Fund, attention Cathy Pachecco, Industrial State Bank, 32nd and Strong, Kansas City, KS 66106.)

They have also looked into the possibility of taking Brenden to the Shriner's Hospital in St. Louis, and although the boy had been accepted into the program for evaluation of his spine, the Hills were unsure if the Shriners could help with the rib surgery because Campbell is not associated with the Shriners. "We had an appointment, but they called and said they had to reschedule," April says. "With the waiting list, we decided not to wait and to go ahead with our appointment in Texas with Dr. Campbell this month."

Kansas state Rep. Tom Burroughs met the Hills when their daughters started playing soccer together more than a year ago. "When I got to know them and found out about Brenden's condition, I offered my assistance. They didn't think it would be necessary, but now they have been through the system and time is becoming critical for Brenden," Burroughs says.

Burroughs has contacted the state insurance commissioner on the Hills' behalf and says he will do what he can for them. "This surgery is FDA approved, but it is experimental in this case because it has only been performed on one other child for this exact deformity. How many surgeries do they need to do before they aren't considered experimental, and who can they do it on if it is a rare case like Brenden's?" Burroughs asks.

Burroughs says the healthcare system in the United States needs some fundamental changes. "These people are just a very loving and caring couple that want the best opportunities in life for Brenden, with the best quality of life he can have," he says.