Healthcare Hostages Dying For Reform

The AHA's "to do list" includes ending exclusions and waiting periods for those with pre-existing health conditions, eliminating premium variations based on health status and gender, and abolishing life-time caps on essential care.

They have also urged Congress to impose limits on out-of-pocket expenses and to ensure that all essential costs are covered, among other priorities.

"We won't settle for less," Brown told ABCNews.com.

Chronically Ill Sacrifice Prevention

The AHA is adamant that prevention is the key to good health. One of their studies concludes that men who devote their earlier lives to good health care have only a 5 percent lifetime risk factor for heart disease over age 50.

Insurance company restrictions are not only expensive, they compromise preventive care, according to the AHA.

Jeremy Aylward was only 12 when he learned he had bicuspid aortic valve stenosis and insufficiency, a long-winded condition that required open heart surgery to put in a mechanical valve at 18.

After his entire chest was split open, surgeons went back in 20 days later to alleviate fluid that had accumulated around the heart of the Sioux Falls, S.D., teen.

"I was working toward a full recovery when the bills began to roll in," said Aylward, now a 25-year-old accountant. "After I got over the initial sticker shock, we began waiting for the insurance company to pay and adjust the prices down."

The first bill was over $300,000 and the family was responsible for $12,000, insisting some of the procedures were unnecessary. By the time the company sorted it out, the bills were in collection.

And when Aylward turned 23 and was no longer insured under his parents' policy, the company dropped him.

"After my initial panic, I began to research other insurance coverage," he said. "Door after door was slammed in my face. I tried COBRA, private insurance, the South Dakota risk pool, short-term major medical, Medicare/Medicaid. It was either too costly or they wouldn't cover pre-existing conditions."

In 2008, he managed to get coverage through a full-time job, but he has to supplement his income with part-time work to pay the $2,500 in annual out-of-pocket expenses.

Money is so tight, he had to skip his annual check-up.

"There was no way I could afford to pay for the visit and tests," said Aylward, who still needs insurance company approval on most procedures.

"This has made me grow up quickly," he said.

For Sara Dorband, a 32-year-old San Francisco mother, worrying about health insurance has stressed out those who are already overburdened by a chronic health condition.

Born with heart defects, she had her first open heart surgery at 4 months old. Since then she has lived with limitations: Dorband could not sustain a pregnancy, so she had her son through a surrogate.

"I've had some scary things happen to me," she said of frightening arrhythmia and stroke-like episodes.

"When you live with heart disease there are inherent challenges," said Dorband.

But none more that keeping good health insurance, which was particularly tough when she was single.

Health Insurance Has been Life's Worry

"It's been the trajectory of my life," she said. "After college, I needed to get a job that had health insurance. Those were the dot.com days and a lot of people had the luxury of taking contract work and exploring their passions. I was never allowed the option to explore."

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