Photograph by Steven Higgs

Randy Paul was born with an immune disorder that has afflicted him his entire life. When his conditions took precipitous declines in the 1990s, his family lost house, home, car and piano to local health care providers, who sued him relentlessly. He is roughly $100,000 debt, and to this day creditors are in line for his wife's wages.

Randy Paul has a pail of gut-wrenching stories to tell about the brutal realities faced by chronically ill citizens in America's "health care system." Some involve family, others acquaintances. Still others involve pain and suffering. As bad, and usually worse, are the tales about creditors and reputation.

Take, for example, the time when Paul's middle daughter was 3, burning hot with fever, and the family's pediatrician wouldn't see her because mom and dad didn't have $36 to pay off an outstanding bill from another of their six kids. "I said, 'We don't have $36,'" Randy recalls. "'My wife and I together, if we added up all the money we have, it might come up to about 20 bucks.' We were that broke." The woman behind the window told them, "We won't see her."

Or the time a local repo man intentionally timed his arrival to reclaim the family piano so the Paul kids would witness the event. "I told the owner of the store, 'Just don't come after 3 when the kids are home. I don't want them to see it.' And he yelled at me on the phone saying, 'You're not going to tell me when to pick up the damned piano.' Sure enough, the kids get home at 3:15, and he rolls in at 3:30."
"All my medical care, up until I was 25, was in the system as a guinea pig."
Or the time a decade ago when the family of eight was days away from being without shelter, all because dad suffers from an immune system disorder that led physicians in his youth to predict he wouldn't live to see first grade, let alone parenthood or middle age.

"We were within two weeks of being homeless," he says. "It was that bad."


While most of Paul's stories stab at the heart, not all of them do. There are some good people in this town, he says.

A woman at the pediatrician's office, for example, was so offended by what the doctor had done that she offered to pay the bill. Randy, who says he "still had some shred of pride left" at that time, balked at the woman's generosity and took his daughter instead to the emergency room, where her treatment cost almost 10 times the bill they owed the kids' physician.

And then there's the friend who stepped in at the last second and saved the Paul family from the streets. He had witnessed their downfall and told them he was buying a rental house that would fit them perfectly. Randy and wife Linda agreed to pay what rent they could, when they could, and their new landlord promised to never evict them.

"That's what we did," Randy says. "The only thing that kept us from the street with six kids was a friend who stepped up and said, 'I'm not going to let this happen.'"

That friend, whom Paul calls an angel, also assumed responsibility for nearly $60,000 of their medical bills, according to records at the Monroe County Clerk's office, which also support his assertion that he's in debt "a hundred grand or so."


That Randy Paul would be alive at 56 to even tell his story is a miracle, he says in so many words during an interview at his favorite meeting spot, the Barnes & Noble bookstore on East Third Street. Seated in his wheelchair, his back to the window lined with Clearance Sale signs, small tables and customers staring at laptops and cell phones, he says he was given last rites three times before he was 15.
"I started getting very sick, and there was a five-year period where I was spending four grand a month on prescriptions, while I was too sick to work."
Paul was born with an immune deficiency that left him almost helpless against the world. "My immune system simply doesn't protect my body," he says, "and it reacts to everything."

The Paul family lived on a farm near Plymouth in North-Central Indiana, and Randy describes asthma attacks so bad during the summers that he had to pause after every step and pull on his knees to prime another breath. "I was horribly ill," he says.

Compounding his suffering was the fact that his parents didn't believe in insurance, and his symptoms went essentially untreated until he was 15, when a doctor in South Bend took him on as a research patient. "That was the first time I got any medicine for it," he says. "The deal was, he would test on me, and if it was good, he'd write journal articles on it. The downside obviously is it could have been bad."

The only downside to the arrangement was that it lasted only until Paul came to college at Indiana University in Bloomington.

"That doctor was a miracle worker for me," he says. "I remember the first day I saw him. I was doing that one-step-at-a-time thing trying to get my breath. He gave me a shot, and instantly I was breathing like I never knew how to breathe. It was amazing. I still remember how it was."

Sophomore year at IU Paul's health declined again, and he found a physician in Indianapolis who likewise took him on as a research patient.

"So all my medical care, up until I was 25, was in the system as a guinea pig," he says. "But it all worked out great for me. I graduated from IU, started my own business and was making a six-figure income, was feeling a lot better because I could buy my own medicine."


Paul, who is completing a term on the Monroe County Public Library Board this December and has worked with the American Civil Liberties Union, operated a financial services company that, according to the Bloomington City Directory, was called Randy G. Paul & Associates.
"When I went into a wheelchair, it was devastating for the two oldest kids."
Up until that time, he made $120,000 a year, and things were good, he says. "I was spending a grand a month on prescriptions, but I could pay for it, and it wasn't really an issue."

But in the early 1990s, Paul was diagnosed with high blood pressure, and a physician gave him a beta blocker, which he would learn makes systems like his "explode," he says. "Well, that set me off to a point where I was when I was a kid. It was that bad."

From that point forward, the only thing that helped Paul's health was prednisone. "The only way that I could get any kind of relief was taking large does of steroids," he says.

And because of his pre-existing conditions, Paul couldn't get health insurance. "Nobody would touch me," he says. "I started getting very sick, and there was a five-year period where I was spending four grand a month on prescriptions, while I was too sick to work."

Because he had a home office and could work, disability was not an option.

Doctors had long warned that the side effects of long-term steroid use could be crippling, or deadly, Paul says. They told him, "Randy, at this rate, you're going to be crippled, you're going to die because of the prednisone."

But because it was the only treatment that addressed his allergies and other manifestations of his immune dysfunction, he had no choice. And the physicians were right. Through the years, he regressed from full mobility to a cane to crutches to a wheelchair.

Paul warned Linda that the "crossover point," when the bills exceeded the income, was going to be bad. "I went from 120 down to 60 down to 30. By the fourth year I was under 20, and the fifth year we had almost no income."
"We were within two weeks of being homeless. It was that bad."
But the bills continued, and the small claims lawsuits, which continue to this day and now number 32, began in 1992. By 1998, when the City Directory showed no more listings for Randy G. Paul & Associates, 17 separate legal actions had been initiated against him and Linda, who worked at the community mental health center that is now called Centerstone.

"We had cars repossessed," he says. "We lost the house. We were evicted, lost pension plans, everything was gone." Linda's wages were garnisheed by their creditors and still are to this day.

While court records show only two health care providers' named as actual litigants -- the majority are from collection agencies -- Paul says all of the problems stemmed from his medical bills. "Everybody that provides any medical service, everybody," he says when asked who sued him for nonpayment of bills. "It's right down the line."

An anesthesiologist who had received more than a thousand dollars from insurance filed a claim against him for $46.


As traumatic as losing everything was, it's but one part of the trauma for families like his, Paul says with the benefit of years of hindsight. "The story I think that isn't often told is the other damage it causes that people don't hear about."

As the doctors' warnings about steroid use came to pass, for example, the children watched their father's physical state regress. "When I went into a wheelchair, it was devastating for the two oldest kids," he says. "I mean they really had a hard time with it."
"We had cars repossessed. We were evicted. We lost the house, lost pension plans, everything was gone."
The family had to move three times. Once, when their utilities were turned off in October, mom and dad feigned an indoor camping trip with the kids until they could pay the bills and get the heat back on.

And even in liberal, compassionate Bloomington, people treat you differently when you are bankrupt, he says. "If you don't have money, if you're poor, or if you're low income, there's still a lot of people that think that's a character flaw and not an economic condition."


The decline in Randy Paul's health has slowed in recent years, and his financial standing has improved, comparatively speaking -- only two small claims have been filed against him in the past four years. And he does have insurance through Linda's job.

But his health will continue getting worse. "It's not going to end," he says. And his most recent experience with the health care system offers a grim preview of the future.

About three years ago, Paul's teeth started breaking. Eating breakfast cereal caused them to crumble. "I was fighting infection all the time," he says. "The infection was going through my body. I was getting pneumonia all the time. I was really, really sick."
"I know that the one button to push with insurance companies is to threaten them that you will file a complaint with the Indiana Department of Insurance. The companies are sensitive to the fact that all complaints have to be responded to, even those without merit."
The insurance company refused to pay for what it considered a pre-existing condition. But after a lengthy fight, company officials agreed to pay but said it would be through their dental plan, which would only cover $500.

Paul's argument that he had a medical and not a dental problem, along with threats to file a complaint with the Indiana Insurance Commission, ultimately prevailed, and the company agreed to pay. So, after years of struggle, he was set to have surgery last fall and had the company in writing saying it was covered.

The company then said the only oral surgeon in Bloomington who could do the procedure wasn't in their network, so Paul would have to pay 40 percent of the bill rather than the agreed-to 20 percent.

"So I fight another six months to win that argument," he says. "By the fall of last year, I had everything agreed to, everything was in writing. January of this year comes, and they say, 'We have to rethink this.' And I just blew a gasket. I thought, 'This is crap, I'm so sick of this,' and finally kind of browbeat them into honoring their agreement."

Getting the procedure approved for the hospital rather than the dentist's office was yet another fight. And when it was over, his oral surgeon said his heart stopped beating twice, and they had difficulties stopping the bleeding.

"I mean, I was in bad shape," Paul says. "And I couldn't get the insurance company to recognize just how bad my health had become."

Now the surgeon says the only way he can get dentures is to have implants because there's not enough jawbone to hold onto them. But insurance is indicating it won't cover the procedure. "There's going to be another fight on this," he says.

While Paul thinks it's amoral that chronically ill citizens must fight for basic health care, knowing how the system works was key to his most recent fights with the insurance company.

"I know that the one button to push with insurance companies is to threaten them that you will file a complaint with the Indiana Department of Insurance," he wrote in an e-mail. "The companies are sensitive to the fact that all complaints have to be responded to, even those without merit. The number of complaints can have a cumulative effect on a company's reputation, which is part of the public record, available to consumers."


Putting his latest battle with his insurance company in perspective, Randy Paul says his experience is not unique. "My story on health insurance is I think an example of what somebody who is chronically ill goes through," he says. "This is the latest, but this is not unique in terms of all the fights I’ve had to fight."

And a 2009 study from Harvard University said his financial experiences aren't all that uncommon, either. Businessweek reported on June 9, 2009, "Medical problems caused 62 percent of all personal bankruptcies filed in the U.S. in 2007, according to a study by Harvard researchers. And in a finding that surprised even the researchers, 78 percent of those filers had medical insurance at the start of their illness, including 60.3 percent who had private coverage, not Medicare or Medicaid."

As Paul reflects on the angels in the community who have helped ease his plight, he lists only two physicians among them. Dr. Lois Lambrecht and Dr. Rajan Mehta were the only ones willing to help.

"I don't think I'd be alive today without those two doctors," he says. "When things got tough, they stopped billing me. They just saw me, and they saw me as much as I needed."

Both told him in roundabout ways that if something like this were to happen to them, they hope someone would help them out.

"They're the only two doctors who would work with me without cash up front," he says.

Steven Higgs can be reached at .