Healthcare Hostages Dying For Reform

Sept. 30, 2009— -- 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.