Healthcare Hostages Dying For Reform

Photo: Healthcare Hostages Dying For Reform: Teens Describe Living With Chronic Conditions, Fear of Future Insurance Coverage

Jessica nearly died several times as a 10-month-old when her Wyoming pediatrician missed a diagnosis of Kawasaki's disease, and she was airlifted in cardiac arrest to Salt Lake City Primary Children's Hospital.

The first bill was 26 pages long, totaled more than $250,000, and most was covered by her parents' insurance.

Today, at 16, Jessica's EKG looks like the "heart of a 70-year-old," according to father, Patrick Neary, a 58-year-old Montana banker. The mysterious virus left two giant aneurisms on her coronary artery.

Even with insurance, her out-of-pocket costs exceed $6,000 a year. And because Jessica has a pre-existing condition, her coverage can never lapse or she will be virtually uninsurable.

"In a sense, I am captive of a large company insurance plan," said her father, who has dreamed of teaching or starting his own business.

Jessica is one of 70 heart patients, doctors and volunteers who are in Washington, D.C., today with the American Heart Association (AHA) for a Congressional Lobby Day Fly-In pushing for health care reform.

"I have to roll with the punches and plan for the future," she said. "My life has been surrounded by this disease."

A Play-By-Play of Health Care Reform

Chronic diseases affect 1 in 10 Americans and are the leading cause of disability, accounting for 70 percent of all deaths, according to the Centers for Disease Control and Prevention.

They are also expensive.

A Harvard University study indicates that 60 percent of all personal bankruptcies in the U.S. were health related -- and that was in 2005, two years before the recession took hold.

The total cost of cardiovascular diseases and stroke in the U.S. was estimated to be $475.3 billion, according to the AHA, and the National Heart, Lung, and Blood Institute.

According to 2009 research by the Michigan-based Altarum Institute, heart conditions are the second biggest out-of-pocket medical expense in the United States -- about $123 billion or 7 percent of all personal health spending.

Only mental disorders, such as anxiety, depression and dementia, account for more -- about $143.2 billion.

Much of the focus on President Obama's health care reform has been on the 46 million uninsured, but chronic conditions like Jessica's wreak havoc on many Americans who have insurance.

These middle-class families report that they are dropped by their insurance companies when they get too sick, and are either denied coverage because of "pre-existing conditions" or face astronomical premiums.

"We hear these stories day in and day out," said Nancy Brown CEO of the AHA. "Even people with health insurance are not able to receive the treatment they need and deserve and that's why this is such a priority for us to have our voices heard in the debate."

Jessica, whose health is stable at the moment, playing on her high school volleyball team, will need to seek a job with good benefits after she turns 23.

Her father worries that she will have to pay for lifelong medications and one day might face double bypass surgery. Even under his plan, there are annual caps.

According to a recent CBS News/New York Times poll, 73 percent of all Americans approve setting limits on what insurance companies can charge for premiums, co-pays and out-of-pocket expenses. About 80 percent favor requiring health insurance companies to cover people regardless of their pre-existing conditions.

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."

According to Jennifer Tolbert, an analyst for the Kaiser Family Foundation, provisions in both the House and Senate versions of the health care reform bills address the consumer protections that the American Heart Association is so vocally supporting.

"There is broad consensus over these particular issues," said Tolman.

A newly created health insurance exchange would prohibit dropping people because of pre-existing or expensive conditions and those who must quit work because they are too sick, providing federally subsidized coverage.

But in the contentious health care debate that has spiraled into a cultural war, Tolbert cannot predict the outcome.

"It's hard to say whether it will pass," she told ABCNews.com. "There's a lot wrong with the system and a lot that needs to be fixed, but at the end of the day, it's a political issue."

Even Mike Nelson, a picture framer from Norwich, Ohio, who opposes government intervention in health care, sees the need for better regulation of the insurance industry.

At 60, too young for Medicare, Nelson spends $12,000 a year on his health insurance through his wife's company, in addition to a $10,000 deductible, $8,800 on drugs and $1,300 on rehabilitative services.

"I'm totally uninsurable and the only way I get it is through her," he said. "It's very difficult. We don't ever go on vacation."

In 1996, when Nelson had bypass surgery, his employer gave him a severance package and told him to "have a good life."

"The owner of the company said, 'Mike you know this is only business,'" he said. "I lost a six-figure income, full benefits, a company car, expense account, travel, and 23 years of my life in the food service industry."

He joins the AHA in Washington because, he says, "Maybe I'll help someone down the road."

"They need to do an investigation of insurance companies," he said. "They should make a profit, but at what point are they taking lives? Enough's enough."

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