HEALTH -- April 16, 2012 at 9:58 AM EDT
Health Reform on the Brink: Uninsured in Missouri
Editor's Note: This story is part of a series profiling the views of ordinary Americans and their experiences -- good, bad or indifferent -- with the health care reform law. The stories are told from the perspective of the interviewees. They do not reflect the views of the PBS NewsHour.
There's no way -- just no possible way that number could be right, Lisa Hill thought. But there it was, in black and white, typed up neatly on an insurance company form letter: $7,972.25 per month.
That's how much health insurance would now cost the five-member Hill family -- just shy of $100,000 per year.
Lisa had recently been forced to quit her job at a title agency in St. Louis to take care of her sick 17-year-old who had struggled with leukemia, autism, and epilepsy. Her husband had no insurance through the family-owned plumbing company. The temporary COBRA insurance that carried over from Lisa's old job had run out, her son's pre-existing conditions had driven individual-plan premiums through the roof, and this was the new reality for the Hills: $7,972.25 per month.
"I called them up to make sure they didn't mean $8,000 per year, and they confirmed the amount," she said. "And I just told them, 'You're crazy.' So we went without insurance -- my whole family did, actually. For three months."
A lot has changed in the two years since Lisa opened that letter. Today, she no longer worries about health insurance for her son. She's fully aware that many Americans disagree passionately, but Lisa supports the health care reform law. She says it brought her peace of mind.
The "No-Worry" Years
For the vast majority of her life, Lisa never gave insurance a second thought. Her father was a machinist; her mother stayed home with the kids. The entire family enjoyed regular doctor check-ups and good dental care. The system worked well for them.
Adam changed that. In 1991, Lisa gave birth to a boy who always seemed a "little bit different." As he grew, he was always quieter than the other kids. A little angrier. He preferred to play with his toys by himself. And then one day, he turned gray.
After a frantic dash to the emergency room and blood tests for anemia, hepatitis and a number of other conditions, one test came back positive. Adam had Acute Lymphoblastic Leukemia. "It was not what I was expecting to hear," Lisa said. "I thought maybe it was a virus."
Still, Lisa considered herself lucky. She had "excellent" insurance through her employer at the time, MetLife. So two and a half years' worth of trips to the hospital and countless rounds of chemotherapy made little dent in Lisa's bank account. Out-of-pocket costs were minimal -- just a $20 copay here and there. "Nothing unreasonable," she said.
Adam eventually stabilized, and so did life. Lisa began working for a St. Louis-based title agency -- a company she selected because it was small enough to feel comfortable but big enough that its group health insurance plan didn't discriminate against Adam's history of leukemia -- a pre-existing condition.
"I needed the insurance," she said. "More than the paycheck, we needed that insurance."
That's because Lisa had recently married the owner of a plumbing company -- a man who was entrepreneurial and financially successful, yet uninsured. The contractors her husband worked with received health insurance through the union, but their union plan didn't cover company owners, office workers or their families.
And all of that was fine in the beginning -- as long as Lisa's company provided high-quality insurance. But then the title agency started "shopping around for a better deal," she said. Nearly every June between 2001 and 2009, the plan changed to one with higher deductibles and co-pays. "Toward the end, I think the maximum out-of-pocket was $8,000 per person and $35,000 for the family," she said. "It was just horrific. It was terrible."
High school wasn't kind to Adam. Though he recovered "beautifully" from the leukemia, something else seemed to be wrong -- something just as dark as the cancer.
Several times per week, the school would call Lisa and tell her that Adam was acting "like he was on drugs," she said. "They didn't know what was going on and they weren't kind. Not until they realized the seriousness of his medical conditions -- then they became very helpful."
The calls increased in volume until Lisa eventually had to quit her job and put the family on a COBRA health care plan.
And it was during that time that disaster struck on a weekend trip to the family's vacation home in Illinois. Adam started having seizures shortly after they arrived, with several lasting for more than five minutes.
"The very last seizure, he had become very psychotic. He was talking about killing himself, about killing his family," Lisa said. "And I'm thinking to myself, 'Now on top of everything else that he has, we also have to deal with some kind of psychiatric issue.'"
It turned out to be autism, epilepsy, and -- after a thorough evaluation -- the determination of a "very low IQ score of 76."
Lisa admits that she could afford the expense, that she and her husband "do very well in life." After all, she drives a new car, lives in a new home, and owns several rental properties.
But Adam's hospital bills soon became overwhelming: $500, $3,000, $9,000, and they kept rolling in.
"And there are some of them that I will say we walked away from," she said. "I had to say, 'we're not going to pay it. He is 18, he's legally responsible himself and you're going to have to write it off.' With a $9,000 bill ... I mean, how do you afford that?"
To make matters worse, the COBRA ran out after Lisa had been unemployed for 18 months. The only option at that point was to transfer the family to an individual plan -- the one that cost nearly $100,000 per year.
And that's when the Hill family became uninsured.
Lisa's family was plunging toward a health care crisis of its own at the very moment that a debate erupted over health reform. For her part, Lisa saw hope in the part of the bill would prohibit insurance companies charging higher premiums to people with health problems or restricting coverage of pre-existing conditions.
She showed up to say as much at a town hall meeting hosted by Rep. Russ Carnahan, D-Mo. And it's there that she met some of the law's opponents.
"And I tried to talk to them and tell them, 'I'm for health reform and here's why,' and they called me fat. They called me lazy. They told me all I wanted was a free lunch and that I should get a job. And it just infuriated me."
She thought of her sick son, of her husband's business, of the fact that "we had worked our tail ends off our entire lives to provide a decent living for our families and have done decently." And then she got even more angry.
"I mean, it just amazed me at their attitudes -- that they don't feel that it's right that they 'pay for my son.' Well here's the thing: I wasn't asking for anybody to pay for my son. I wanted to purchase --- not be given -- purchase a policy for my son. And I wasn't able to do that. Not with his pre-existing conditions."
She began volunteering for the effort -- cold-calling area residents and asking them to support the bill, canvassing her neighbors, and organizing groups of volunteers to do the same.
Then, just as Lisa Hill was growing desperate, she found some relief -- a double dose of it, in fact -- half from the old health insurance system, half from reform. Three months after they lost coverage, the laborers' union extended their plan to the Hill family. That allowed the Hills to pay $1,200 per month for a plan that includes dental, vision, and health. Doctor visits are $15. Prescriptions are $25.
And a few months after that, President Obama signed the health care reform bill into law, allowing Adam to stay on the family plan through age 26. He can go to his oncologist, neurologist, psychologist, psychiatrist, and primary care physician as needed. All for $15 per visit. And after the age of 26, Adam won't be charged higher premiums because of his disorders. Insurance companies will be barred for charging higher rates for pre-existing conditions starting in 2014.
Of course, that could change if the Supreme Court rules that Congress overstepped its constitutional bounds when it passed the health care reform law. Many question whether the federal government has the legal authority to force the American public to buy a product. They also question whether other parts of the law can stand if the mandate falls.
But even if the Court strikes down the mandate alone, leaving much of the law intact, the pre-existing condition rule may need to come down, too. In the absence of an expansion of the market to help spread risks, many analysts say that forcing insurance companies to stop charging higher rates for those with pre-existing conditions would put an unfair burden on the industry.
Lisa listened to the Court proceedings in March with a building knot in her stomach. "I'm positively sick over it," she said. "If they reverse this decision, then Adam doesn't have insurance I don't have any clue of what he'll do or how."
Do you agree with Lisa Hill? In the weeks ahead on the PBS NewsHour's Health Page, we'll share the stories of ordinary Americans who love, hate, and feel indifferent about the Affordable Care Act. As the Supreme Court decides the fate of the law, we want to hear your verdict. Share your opinions here.
Photos courtesy of Lisa Hill. Starting from the top, the photos include: Adam Hill; Adam (front) and his brother Josh; Adam in high school; Lisa and her husband Ed with Adam at his high school graduation.