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Sick, without a safety net

Parks Johnson was on medication for bipolar disorder and recovering from surgery when his health insurer quit covering him. Like millions of Americans, he's now on his own.

December 23, 2009|By Faye Fiore and Janet Hook

Reporting from Washington and Fairfax City, Va. — On the wall across from Tucker Johnson's easy chair is a three-paneled drawing he believes was an early clue to his son's mental illness, an exacting sketch of the Pillsbury Doughboy, first intact, then split in two, then unrecognizable.

Parks, as his family calls him, was a senior at Rancho Bernardo High School in San Diego when he drew it. When his father asked him what it meant, he said, "That's how I feel."

Tucker Parks Johnson Jr. was 24 when doctors diagnosed him with bipolar disorder, a condition marked by wild mood swings. By then, he had walked out on his parents' deck and announced he was going to jump. He didn't intend to kill himself -- he thought he could fly.

But the low point of his troubled life wasn't the year he learned he had a mood disorder, inherited from his mother; doctors found the right combination of antipsychotic drugs to keep him sane. The low point came six years later, when the health insurance industry refused to cover him anymore because he was too sick.

Ever since, every day is a struggle to get along without doctors, to find his medications at the cheapest possible price. He hasn't seen a psychiatrist in four years, or a dentist in seven. He has nightmares that his teeth are falling out.

Now, Parks Johnson's best hope is in the hands of Congress. As the Senate prepares to vote on its version of a reform bill, ideas like the "public option" and Medicare expansion are dead.

But no one is talking about dropping the kinds of insurance reforms that will open a new chapter in the lives of sick people like him: those with mental illness, heart disease, cancer, diabetes -- chronic ailments that touch almost every family in America. Those patients are the ones most likely to lose coverage because their policies impose lifetime limits, or because they have, in industry parlance, a "preexisting condition."

Their pain may continue, their premiums may be high, their diseases could remain incurable, but the legislation President Obama is expected to sign into law next year will almost certainly ensure they have access to health insurance.

"With my situation that's the best news I could imagine. Health insurance would free me up to go to school, to work. Without it, it's just too hard," Johnson said.

Now 34, he is caught in a predicament that pervades the U.S. healthcare system and helped spur the clamor for reform: Those who need coverage the most have the hardest time getting it.

With no affordable care, Johnson's health deteriorated and he couldn't work. Because he couldn't work, he couldn't get health insurance.

The result: a state-sponsored mental health facility treats his mind for $15 a visit, but not the rest of him. His foot drops from nerve atrophy in his back and he falls down often, giving some the impression he's drunk.

His last bipolar breakdown came two years ago. All things considered, "it wasn't a bad one," his father said. "He was only in jail for three days."

Parks Johnson lives in the Mississippi Delta, cooking and caring for his grandfather for $200 a week. His bedroom is the one his mother had growing up. His greatest fear is getting sick. To control his weight, he walks daily with his grandfather's chocolate lab, Dolly, lifting his right foot and setting it down in an awkward gait.

"It's really scary. What if something happens with my back with no insurance? We've got all kinds of collection people sending bills for thousands of dollars now," Johnson said, having just finished making his grandfather's lunch.

Back in high school, Johnson's future looked bright. His oil paintings and sketches were superb. He made the golf team and the honor society. When he won a scholarship to study architecture at Mississippi State, the local paper wrote it up.

But the fast pace of college proved too much. A year later, at 19, he was back home with his parents. Four years after that, he was out on the deck, convinced he could fly. His father recognized signs of the same disease that had afflicted his wife years before and knew his son was bipolar before the doctors announced it.

With the right medication and regular sessions with a psychiatrist, Barbara Johnson was living a full and happy life. After a period of adjustment, it looked as though her son could too. Soon he was back to work driving a warehouse forklift, covered by Kaiser health insurance.

When his godfather offered to teach him the scrap metal business in Atlanta, with Blue Cross coverage, Johnson leaped at the chance to live an independent life: At 28, he got his first apartment. It did not last long.

The treatment that kept his mind healthy made his body a wreck: The drugs caused weight gain -- at 5-foot-9, he ballooned to 290 pounds. He stopped taking the medicine, stopped showing up for work and got fired.

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