Ray Cerniglia's HMO denied payment for his son's bone marrow transplant

From CNN Correspondent Eileen O'Connor

WASHINGTON (CNN) -- In author John Grisham's fictional blockbuster "The Rainmaker," a parent fights for a sick child who is refused a vital bone marrow transplant because the procedure wasn't covered by insurance.

The situation in the novel is not much different from the real life of Ray Cerniglia.

He signed on to his health plan at work. But when his son, Matt, was undergoing chemotheraphy, Healthkeepers, a division of Trigon Blue Cross Blue Shield in Virginia, refused to pay for a special type of bone marrow transplant recommended by their own doctor.

"I was angry, I was frustrated," said Cerniglia.

Healthkeepers said it covers the procedure, but not in this case ,since a board of specialists determined "there is no peer-reviewed medical or scientific evidence" that the treatment would be effective.

Matthew's doctors, including a specialist they consulted at the National Institutes of Health appealed, writing, "it is a reasonable therapeutic approach."

Healthkeepers denied two more appeals, saying "although the procedure may be medically necessary, it is denied as a non-covered benefit."

"It makes me sick," Cerniglia said. "You really have to wonder why these people are in the health care business."

Cerniglia's company, Mitretek Systems in McLean, Virginia, took up a collection, paying for most of the procedure, but he still owes $20,000.

"We were in the fee-for-service [system] where everyone was doing every test possible and costs were skyrocketing," said Terre McFillen Hall at the Center for Patient Advocacy. "Now we're at the complete other end of the pendulum where people aren't getting care."

Maryland State Insurance Commissioner Steve Larson said he gives health maintenance organizations credit for bringing costs down and some of the industry's problems are transitional.

However, he said the industry needs more oversight through new laws like those passed in Maryland and 40 other states.

"One of the things this law does is allow me, the insurance commissioner, to certify the medical director," Larson said. "And I have the ability to end his license if I find he's acting inappropriately."

Maryland prosecutor Caroline McElroy goes after HMO abuses.

"If, in fact, somebody doesn't get the care they need [and] if someone dies because of that," she said, "you can go to jail for the rest of your life."

Small comfort for Cerniglia, who only wants Matt to be able to live his life.

"I want him to have a normal life and I want to give him the best chance of having that," he said.