Jacqueline Ruess was lying on a bed inside a hospital in Boca Raton, Florida, still woozy from anesthesia but hoping that, maybe just this once, she'd caught a break.
She'd had laparoscopic surgery in order to examine a growth her gynecologist thought might be ovarian cancer. Ruess, who was 34 at the time, in the fall of 2001, feared that her two young boys, whose father died from a congenital heart defect three years earlier, were on the verge of losing her as well.
"It was probably the darkest week of my life since my husband passed away," she recalls.
But as Ruess regained consciousness, she saw her own mother at her bedside, looking relieved. She began to process what she was hearing: You're going to be OK. The growth was on the fallopian tube, not her ovary — a far less worrisome situation. Soon after, a pathology report would confirm that the tumor itself was benign.
"The only thing I could think about was my boys," Ruess says, "and the great relief in knowing I was going to be around to raise them after all."
But four months after Ruess's medical crisis passed, she faced a financial one. The Insurers Administrative Corporation (IAC), the company in Phoenix that managed Ruess's health care policy, completed what it says was a routine review of her records and discovered what it called evidence of a preexisting gynecological condition.
Because Ruess had not disclosed the symptom on her application, her insurer said she had never been eligible for coverage of gynecological problems. The result: Ruess was on the hook for the cost of her surgery, which, including doctor and hospital bills, amounted to more than $15,000.
Ruess was flabbergasted. "I was — please forgive me for lack of a better term — pissed off," she says. What IAC called a preexisting condition was a one-time notation in her file regarding "dysfunctional uterine bleeding" — that is, irregular periods, a common issue that at some point affects between 10 percent and 30 percent of women in their reproductive years. At the time she experienced erratic periods, Ruess had lost her husband and her father had died, too, which is why her doctor attributed the symptom to stress.
Reassured that there was nothing medically wrong, Ruess quickly put the problem out of her mind and didn't even bother to fill the prescription for the birth control pills her doctor had given her to regulate her cycle. Even though there was a question on her insurance application about "abnormal menstruation" in the past seven years, she didn't think it applied to her because her symptom hadn't been attributed to an underlying medical problem.
"It never crossed my mind to mention it on the form," Ruess says, noting that she'd been forthright about a more serious issue, her son's asthma, when she applied to another insurer for a policy for him. She'd correctly predicted that he would be declined coverage because of it. "If I was going to hold back anything," she says, "I would have held back that information."
Here, too, she'd acted in good faith, she explained to IAC. Her irregular periods had nothing to do with the growth on her fallopian tube. The insurer, she felt, was simply looking for an excuse to avoid paying her bills. But IAC wouldn't budge and further informed Ruess she actually owed a few hundred dollars to her insurer, because her premiums should have been higher. Frantic, Ruess contacted attorneys, journalists, even the governor of Florida.
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"I am a healthy and honest 34-year-old widow raising two small children alone," she wrote in a formal complaint to the Arizona Department of Insurance in April 2002. "I am desperate." (A spokesman for IAC says that had the information on Ruess's application been "complete and accurate," she'd have been advised that the policy would have limitations, and she could have opted to apply elsewhere.)
1 in 4 Americans lack adequate coverage
Ruess never expected to find herself in such a circumstance. She'd grown up in a comfortable, middle-class household; even after her husband died in 1998, she was able to remain an at-home mom because of his generous life insurance policy. She'd taken pains to make sure she and her sons were insured, first with a policy carried over from her husband's job (the federal COBRA law allows a spouse to continue coverage for three years after a death), and then by carefully researching and purchasing insurance at a cost of $350 a month for her and one of her sons. (She was able to get coverage for her asthmatic son from the state.)
In other words, she did everything right.
Yet she was facing major debt and was soon to be without thorough coverage altogether. Ruess says she told a supervisor in IAC's underwriting department that she hoped he'd never find himself or a family member in a similar situation.
"I couldn't believe that I was an American citizen," she says. "As a middle-class woman who was more than willing to pay for my medical benefits, I was getting the short end of the stick." And the statistics suggest that women such as Ruess, who buy their insurance on their own, are particularly vulnerable to winding up in similar straits.
The health insurance crisis affects millions of Americans. At any given moment, the United States Census shows, 47 million people are uninsured. Some 25 million more are underinsured, meaning their benefits aren't sufficient to meet their needs, according to a recent study by the Commonwealth Fund, a health care policy foundation in New York City. Combine those two groups and the total suggests that almost one fourth of Americans don't have adequate health benefits.
But it's those who must purchase their own coverage, typically because they are self-employed or work for a company that doesn't provide benefits, who are in a uniquely precarious position. More than 27 percent of people who are self-employed have no insurance, compared with 13 percent for those who work for large companies. If you're buying your own health insurance, not only will you pay higher premiums than those who get a bulk rate as part of a group policy, but insurers in most states have much greater leeway to turn you down if they think their odds of losing money on you are too high.
When confronted with an applicant who has any kind of medical history (including routine issues such as allergies, a past cesarean section delivery or acid reflux), insurers are usually perfectly free to charge much higher rates or to deny coverage altogether — leading to an entire category of women who are essentially uninsurable.
A woman might not realize she is uninsurable until she needs coverage and finds that no one will sell her a policy. Or she might be hit with this information after months or years of dutifully paying premiums, when filing a major claim provokes the insurer to review her records. Such practices are not only legal but, from the standpoint of the insurance companies, also entirely logical: They are good for business.
Weeding out the most infirm
History explains how we got here. During the Great Depression, hospitals suddenly found themselves full of patients too poor to pay their bills. So they began offering insurance policies based on a simple principle: Everybody pays a modest premium, so there is enough money to cover the large medical bills of the small minority of the population with serious health problems. If, heaven forbid, you got sick, you were covered, and hospitals stayed in business.
But commercial insurers, who joined the game in the 1950s, had another obligation: pleasing shareholders. The simplest way to make money was to try to attract healthy customers, who were less likely to rack up big medical bills. That way, insurers could charge lower premiums yet still clear a profit. Excluding sick people wasn't so easy when insurers agreed to cover the employees of a large corporation.
But denying coverage to risky prospects who sought coverage individually was simple. If an applicant had a history of illness, weighed too much or worked in a job that carried greater-than-usual physical risks such as mining or construction, the insurer would charge higher rates or simply refuse coverage. And once a few insurers started screening applicants, the others were forced to follow suit — or chance winding up with all the sickest people, a certain path to bankruptcy. Within a decade, such weeding out of the infirm or those likely to become so was common practice.
To exclude people they deem poor risks, insurers today use sophisticated techniques. They can tap into databases that reveal your past prescriptions and use "predictive modeling" — a complex, computerized algorithm — to estimate how likely it is that your medical bills will exceed the amount you pay in premiums. Every insurer has its own list of medical conditions for which it may charge higher premiums (have you ever been treated for anxiety, an eating disorder, an ulcer, fibroids or even irritable bowel syndrome?) or, in some cases, nix coverage.
An Aetna field guide for underwriters, for example, lists 71 serious conditions — including insulin-dependent diabetes and cystic fibrosis — for which it typically refuses coverage automatically. More than 50 others are not excluded by rote but might affect coverage decisions, depending on your case history. HealthNet, another insurer, notes that migraine sufferers are sometimes covered. If you haven't taken a prescription medication in a year or visited the emergency room in two years, you get a preferred rate. But if you have, you will either be charged a higher premium or declined altogether.
Cancer is not on Aetna's automatic exclusion list; HealthNet generally will cover you, depending on the type of cancer, if it has been 10 years since you've finished treatment. But most experts acknowledge that people who have cancer or have recently beat it have a tough time finding individual coverage — a fact Angela Clay of Atlanta discovered the hard way.
Clay, 33, was diagnosed with non-Hodgkin's lymphoma eight years ago, while she was living in South Carolina. She survived, thanks to a regimen of chemotherapy, radiation and stem cell treatment, for which she was covered through her job at the time. After she moved to Atlanta in 2001, she had coverage through her job as a teacher in a day care center.
Then another center offered her an assistant manager position in 2004 — a step up with better pay but no benefits. Clay figured she'd simply buy insurance. "I'd go online once a month and fill out applications," she says. The numerous insurers she has tried turned her down, she says, and one told her she had to be in remission for 10 years to receive health insurance. "I've got more than two years to go," Clay says.
Clay still has no coverage and so must put off nonemergency medical care, including the follow-up she needs to be sure the cancer hasn't returned. "I'm very worried," she says. "I know I need checkups for my health. It makes me feel vulnerable." She sees a doctor only for emergencies, such as a severe boil she developed in January. (She's still paying off the $800 it cost to have the doctor drain it, at $20 a month.) Clay fears the stress of living without insurance will further harm her health. "It's hard for me to focus because I have this on my mind," she says.
In perfect health — but still denied
Even if you've never had a catastrophic illness like Clay and think of yourself as 100 percent healthy, you could still be at risk of being shut out.
Juliann Delozier of Murphy, Texas, is a 32-year-old, nonsmoking mother of two — who, in every obvious respect, is in perfect health. UniCare, a Chicago insurer, approved coverage for her children but not for her. "They would not tell me over the phone why I had been denied; I had to wait to receive a letter in the mail," she says. The letter said the company would not offer her a policy because of her "history of infertility."
Delozier says she'd taken two drugs, Metformin and Actos, to help her ovulate so she could conceive both of her children. She doesn't know why having taken these drugs disqualifies her, especially as she's not planning to have any more children. A spokesman for UniCare declined to discuss it, saying only, "These are decisions made on a case-by-case basis." Delozier is angry. "Why am I, a hardworking citizen who wanted to bear children and needed the aid of a medication to do so, being penalized by health insurance companies? It is totally unfair," she says.
Because every insurer has its own criteria for underwriting, persistence sometimes helps. Delozier was eventually able to get a plan from Humana. But many people can't get coverage regardless of how hard they try because their past or present medical problems may recur or are so expensive that insurers see them as a losing proposition. That is why, over time, federal, state and local governments have tried to help. Some states offer private insurance through special high-risk pools; a few others allow residents to enroll in Medicaid or the State Children's Health Insurance Program (SCHIP), or make available other forms of public insurance. There are also two federal laws (COBRA and the Health Insurance Portability and Accountability Act) designed to help people keep insurance they already have and prevent insurers from excluding those with preexisting conditions. Some states have similar laws.
Such initiatives definitely make a difference; Medicaid and SCHIP cover about 70 million people, for instance. But they don't protect everyone. Over the years, opponents of such programs have fought to limit their reach, either because they lead to more government spending or because they would limit the profits private insurers could make.
Meanwhile, families such as Kyla Hebert's are left without even these options. Hebert, a 25-year-old mother of two from Pasadena, Texas, has a daughter, Katie, who was born three and a half years ago with severe developmental delays and disabilities. MRIs have revealed brain lesions, which are thought to affect everything, including her hearing (she is partially deaf in one ear) and her ability to eat and digest food. (Katie survives on a mostly liquid diet.) Hebert, a nursing student at night, has no insurance. Hebert's husband works for a bank, which does offer a plan, but the couple can't afford it. The policy would cost a third of Josh Hebert's take-home pay and, even then, would cover only routine pediatric care. Katie has needed, among other things, genetic testing (which runs about $3,000 per test) and ongoing occupational and speech therapy (which costs about $500 a week). None of that would have been covered.
Hebert thought about purchasing private insurance but was told that Katie wouldn't be accepted in her current condition. "I filled out an application, but an agent told me, 'You might not want to put it through because she'll have an official denial on her record.'" (The fact that a policy wasn't issued could telegraph to other insurers that she might be a bad risk. If Katie's health improves, the broker advised, she'll stand a better chance of being insured in the future.)
So Hebert turned to the state's public insurance programs and found out that her family was considered too well-off to be eligible. The Heberts, although struggling, had a monthly income too high for Medicaid and about $260 above the cutoff for SCHIP. Hebert then went to what she considered a last resort: her state's high-risk pool, the supposed safety net for people too sick to get coverage on their own. "I thought, This is exactly where we need to be. It sounded perfect for us," she says. But only people without access to group insurance can buy into the pool. Because the Heberts technically had access to a policy at her husband's bank, albeit an inadequate and unaffordable one, they couldn't enroll.
The Heberts finally got some coverage for their kids (the parents remain uninsured), but only when they began paying for child care. This expense made their remaining income low enough that both of their children qualified for SCHIP. But that was after months without insurance, during which the Heberts were forced to ration Katie's care — skipping the occupational and speech therapies, canceling her auditory brain stem test that would check for further hearing impairment and postponing an appointment with an orthopedist who would help her learn to walk better.
"I didn't know there were responsible, hardworking people who wanted insurance, were willing to pay for it but couldn't get access to the coverage they need," Hebert says. "It is surreal."
Families such as the Heberts are among many people hoping for change. During the past couple of years, a backlash against the exclusionary practices of insurance companies has been brewing, following revelations in the Los Angeles Times that California companies were systematically reviewing high claims among individual consumers — and one was even awarding bonuses to staff who came up with grounds for cancellations. One carrier, HealthNet, agreed to pay $9 million to a breast cancer patient whose chemotherapy was interrupted because the company annulled her policy.
Such lawsuits prompted the state to investigate, and it separately brokered agreements with five major insurers to reinstate coverage for 3,370 people who lost policies. But a more sweeping change is necessary, and in this election year, there is serious talk of universal health care.
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