Victims of 'Health Insurance Bureaucracy' Speak Out

Sept. 16, 2009— -- "These guys are just playing with my life."

Erinn Ackley still remembers her father's words as he struggled with an aggressive form of cancer in 2006. Bill Ackley had health insurance through his job as a public school teacher. But as his life hung in the balance, his insurance company questioned the necessity of a potentially life-saving treatment doctors prescribed and, for a time, refused to pay.

After months of appeals to overcome the "bureaucratic roadblocks," Ackley finally received approval for the treatment he sought. But to his daughter Erinn, the delay just might have cost her father his life.

"Dad was finally transplanted 126 days after the first transplant request [but] he never returned home," said Ackley. "He passed away at the age of 57, leaving a grieving widow and daughter, and only one grandchild born 17 months later, that he will never play with."

"When a loved one is going through a life or death struggle, you can hear the clock ticking every minute," she said.

Ackley's story was one of several accounts shared with members of the House Oversight and Reform Committee on Wednesday of the often heart-wrenching struggles some Americans face in dealing with the "private health insurance bureaucracy."

"We're always more informed when we hear about personal experience," said subcommittee Chairman Rep. Dennis Kucinich, D-Ohio.

At the hearing, lawmakers of both parties agreed that delays – or denials – of coverage like the one faced by Ackley are unjustifiable and have become too common.

"Every single American would agree that what you went through was wrong," said Rep. Jim Jordan, R-Ohio. "Americans hate being told what to do, and this idea that someone is going to get between them and their doctor doesn't sit well."

The story of Mark Gendernalik's infant daughter, Sidney, was among the emotional testimony before the committee regarding insurers' attempts to avoid costly payouts.

"They were trying to exhaust us," said Gendernalik, the father of twin girls from Los Angeles, Calif., of the repeated delays and denials for an expensive treatment Sydney needed for a rare infant spasms syndrome that can lead to irreversible mental retardation.

"After six days of being inpatient, doctors said we have to discharge you, we can't get a response from your insurance groups," he said, choking up.

"I spend so much time fighting to get care. I feel like medical manager for my daughter, not her daddy… I need you people to let me be her daddy," he implored members of the committee. "We are disenfranchised now… all I want to do now is go home and be a dad."

Similar scenarios have been the target of state insurance regulators around the country in recent years, resulting in a number of cases against insurers for wrongfully delaying or denying claims.

PacifiCare, a subsidiary of United HealthCare which also insured Gendernalik, paid a hefty settlement in California in 2008 for improperly denying 130,000 claims, among other violations.

"Commercial plans will always, always, compete to avoid sick people, even in a regular marketplace," said Karen Pollitz, director of the Georgetown University Health Policy Institute.

"There has never been a more deadly time for patients in terms of insurance practices," testified Dr. Linda Peeno, a former review physician for Humana insurance in Louisville, Kentucky.

ABC News' Vija Udenans contributed to this report.