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Barbara Calder lives in nearly constant pain. Her limbs dislocate at the slightest movement, even when she turns over in bed at night. She wears her hair short because brushing it hurts too much.

Mrs. Calder suffers from Ehlers-Danlos Syndrome, a rare genetic disorder in which the connective tissue that binds the body together gradually falls apart. But, although she began suspecting she had the disease 16 months ago and had health insurance, she spent a year battling numerous roadblocks just to see a specialist who could diagnose her condition. Now Mrs. Calder says she is left wondering whether she's going to die suddenly because she can't get the test that would tell her whether she has the fatal form of the disease.

Mrs. Calder's difficulties mirror those of millions of insured Americans who get lost in the U.S. health-care system's giant maze. For many, the journey is frustrated by coverage limits, denied claims and impersonal service.

Polls show that health care has become Americans' No. 1 domestic concern, thrusting it to the center of the presidential campaign. Every major candidate has introduced a health-care reform plan. But for the most part, these plans focus on providing coverage to the 45 million uninsured or reining in medical costs. They do little to address the myriad hurdles insured patients often encounter when they seek care.

Trying to navigate these obstacles can be especially maddening for patients like Mrs. Calder who have little-known genetic diseases. Matthew Taylor, the geneticist at the University of Colorado Health Sciences Center who diagnosed Mrs. Calder, says few physicians know about such diseases, and health insurers' computer programs tend not to recognize them. Insurers, for their part, argue that they are merely fulfilling employers' demand to control medical costs.

Mrs. Calder, a petite 52-year-old with striking blue eyes, is a trained chef. For as long as she can remember, her body has been unusually flexible. She remembers taping her toes as a child to keep them from dislocating all the time.

One morning three years ago, Mrs. Calder woke up and couldn't lift her left arm. Despite undergoing surgery twice on her left shoulder and months of physical therapy, she couldn't regain full use of that arm and had to quit her job as a chef for the University of Colorado.

Barbara Calder suffers Ehlers-Danlos Syndrome, a genetic disease that causes her joints to dislocate. She also struggles to get diagnosed and treated. WSJ's John Carreyrou reports.

Unaware of the true cause of her symptoms, she applied for Social Security disability benefits in February 2006. Her application was rejected because her disability was deemed not severe enough. Mrs. Calder hired a lawyer to appeal the decision.

In July 2006, her 19-year-old daughter, Ines, collapsed while at work at a Denver salad bar when joints in her hips dislocated. An orthopedic surgeon examined her and told her she very likely had Ehlers-Danlos Syndrome. The disease is hereditary, he informed her, so she must have inherited it from one of her parents.

EDS is named after two doctors, Edward Ehlers of Denmark and Henri-Alexandre Danlos of France, who identified it at the turn of the 20th century. Patients with EDS have faulty collagen, a protein that gives strength and elasticity to the tissue that connects muscles, joints and ligaments. There are six types of EDS. The most serious, known as the vascular type, often results in sudden death from the rupture of an organ or vessel. About one in 5,000 people are estimated to have a form of the disease.

Mrs. Calder looked up EDS on the Internet and recognized all her symptoms. Though she had stopped working, she had health insurance through her husband, Bruce, who is also a chef. Mr. Calder was working at Cheyenne Mountain Resort, a luxury hotel run by hotel-management company Benchmark Hospitality International. Benchmark funds its own health plan but uses an employee-benefit manager to administer it.

Mrs. Calder called the plan administrator, Health Administrative Services, about seeing a geneticist to determine whether she indeed had EDS. HAS, which has since renamed itself TriSurant, told her she would first need a referral from a rheumatologist. In August 2006, Mrs. Calder saw a Colorado Springs rheumatologist who referred her to Dr. Taylor, one of the few geneticists in Colorado to focus on adults.

Dr. Taylor was listed on the Benchmark health plan's physician network, but a consultation with him is about $650. Mrs. Calder called HAS again to check whether her plan would cover his services.

The HAS representative had misunderstood Mrs. Calder's request. The term "genetic counseling" often refers to reproductive advice dispensed by counselors who have a master's degree in genetics but not a medical degree. Ernest Mendez, vice president of operations at HAS, says it "wasn't immediately clear" that Mrs. Calder was seeking a consultation with a medically trained geneticist. Her plan covered the latter but not the former, he says.

Frustrated, Mrs. Calder says she showed up unannounced at the office of Donna Frost, Cheyenne Mountain Resort's human-resources director, to plead her case. In a heated conversation, Ms. Frost also told her that seeing a geneticist was a lifestyle choice, Mrs. Calder says. Ms. Frost says she doesn't remember the meeting, but says she wouldn't have been in a position to help because HAS, not Benchmark, had the power to approve or deny employees' medical claims.

Mrs. Calder and her husband had several more phone conversations with HAS representatives and Ali Hardigree, a Benchmark executive in Houston. They told the Calders that Mrs. Calder needed a letter of medical necessity from Dr. Taylor.

On Oct. 12, 2006, Dr. Taylor faxed Ms. Hardigree a letter explaining that Mrs. Calder's symptoms were "highly suggestive" of EDS and seeking to dispel any misunderstanding about the disease. Mrs. Calder "stated that HAS deemed that her problems are related to lifestyle choices. If Mrs. Calder has Ehlers-Danlos syndrome or another connective tissue disorder, this is something she was born with due to a genetic change that she has no control over," he wrote, enclosing a paper from a medical journal about EDS.

Four days later, on Oct. 16, Benchmark laid off Mr. Calder. The Calders wondered whether the dismissal had anything to do with Mrs. Calder's medical issue, recalling that Benchmark had had trouble funding its health plan in the past.

Benchmark says the termination of Mr. Calder, part of a layoff of a dozen employees, had nothing to do with his wife's health issues and was instead part of an effort to cut back on management-level employees. Dennis Blyshak, Benchmark's chief financial officer, says the company's health plan did run out of money in late 2004 and early 2005, but the problem had long been resolved by the fall of 2006.

HAS says one of its nurses authorized Mrs. Calder's consultation on Oct. 17, the day after Mr. Calder was let go. But the waiting period for appointments with Dr. Taylor is about eight weeks, and the Calders' insurance was expiring at the end of the month.

Under the Consolidated Omnibus Budget Reconciliation Act, the federal law known as Cobra, the Calders could have prolonged their Benchmark coverage for up to 18 months. But with both husband and wife unemployed, the couple says they couldn't afford the $1,267 a month in premiums.

By December, Mr. Calder had found another cooking job at the Colorado Springs Fine Arts Center. It came with health insurance from Anthem Blue Cross and Blue Shield, a unit of WellPoint Inc. Anthem told Mrs. Calder it would cover a consultation with Dr. Taylor, but her coverage wouldn't start until April 1 because of a three-month waiting period for new hires.

That coverage gap became problematic as Mrs. Calder prepared for a Social Security appeal hearing scheduled for March. Without an official diagnosis of her condition, she worried that her appeal for disability benefits was unlikely to succeed.

Now uninsured, Mrs. Calder tried to get examined at Peak Vista, a Colorado Springs clinic that provides low-cost care to people without health insurance. No doctor there had heard of EDS. Peak Vista recommended she go to a state genetic clinic in Denver. That clinic told Mrs. Calder it focused only on obesity and diabetes.

Mr. and Mrs. Calder went to her Social Security appeal hearing still lacking an official diagnosis. During the hearing, Mrs. Calder says, a vocational expert for the Social Security Administration argued her joint problems shouldn't preclude her from working because cooking was a "sedentary" profession that didn't require much physical effort. Mr. Calder, who spends most of his working hours standing and lifting heavy pots and pans, says he nearly jumped out of his seat.

Mark Hinkle, a spokesman for the Social Security Administration, says vocational experts aren't Social Security employees but consultants, and this one may have been quoting from an outdated Labor Department manual.

The administrative judge overseeing the hearing sympathized with Mrs. Calder. In June, the Social Security Administration reversed its decision and granted Mrs. Calder $1,167 a month in disability benefits. That started the clock on a two-year waiting period after which Mrs. Calder will become eligible for Medicare.

In the meantime, the Anthem coverage kicked in and Mrs. Calder was finally able to schedule an appointment with Dr. Taylor. On July 16, a year after she began her efforts to get diagnosed, Dr. Taylor examined Mrs. Calder and confirmed she had EDS.

Dr. Taylor prescribed Celebrex, the only painkiller that had provided Mrs. Calder some relief in the past, and recommended she return for a test to determine whether she had the vascular type of EDS. Dr. Taylor was concerned because both Mrs. Calder's mother and maternal grandfather had died young from unclear causes.

Although EDS isn't curable, Dr. Taylor felt Mrs. Calder could prolong her life by wearing a medical bracelet and undergoing regular monitoring if it turned out she did have the vascular type of the disease. In a letter to her primary-care physician, he suggested a skin biopsy, a simple method of determining what form of EDS a sufferer has.


Mrs. Calder tried to get her Celebrex prescription filled at a local drugstore. Anthem refused to cover the drug, telling the pharmacist she needed to try over-the-counter painkillers first. When Mrs. Calder called the insurer to protest that she had tried other painkillers, an Anthem representative told her that only her doctor could get the drug approved by calling the insurer on her behalf.

An Anthem spokesman, James Kappel, says it considers Celebrex a "step-therapy" drug and doesn't cover it unless other, cheaper treatments have been tried first.

Mrs. Calder says she called Anthem back a week later to inquire whether her policy covered genetic tests. And once again she was stymied by a misunderstanding.

Mrs. Calder says a representative told her that Anthem doesn't usually cover tests for diseases that aren't treatable. Mr. Kappel says Anthem has no record of that call and that skin biopsies were in fact covered by Mrs. Calder's plan. "If we had received a call about a skin biopsy, we would have approved it," he says.

Mrs. Calder says she didn't know to use the term "skin biopsy" because Dr. Taylor had just described it as a test to her.

In August, Mrs. Calder's husband changed jobs to take a better-paying position making meals for students and faculty at Colorado College. The new job came with health insurance from Kaiser Permanente, but there is another three-month waiting period before that coverage starts.

The Calders again had the option of extending their existing coverage under Cobra. But they felt the high cost wasn't worth it, because Anthem refused to cover the one drug that gave Mrs. Calder pain relief, and they were under the mistaken impression the insurer wouldn't cover the test she needed.

Mrs. Calder is uninsured again until Dec. 1, when the Kaiser coverage begins. Her health is slowly deteriorating. She says her kidneys bleed, and her hips have trouble supporting her slight frame. Her arms dislocate whenever she carries anything heavier than five pounds. "I'm a pretzel person," she says.

She still doesn't know whether she has the vascular type of EDS. She worries that if she does, then her daughter and her eldest son, who is 21 and also has joint problems, probably have it, too, putting them at risk of dying young. Even though both have health insurance through their jobs as hotel employees, neither has sought a firm diagnosis from a geneticist. They fear that having a pre-existing condition on their medical record would make it hard to get individual insurance policies if they are laid off.

In recent weeks, Mrs. Calder has been lobbying Mr. Calder and her children to move to Belgium, where she once lived with her ex-husband, arguing that they could get good care there cheaply through the country's universal health-care system. One of the leading researchers of EDS is a Belgian geneticist who works at the University of Ghent.

Mr. Calder, whose father was a doctor and mother was a nurse, grew up believing the U.S. health-care system was the best in the world. But he says his wife's struggle has eroded that faith. "I've actually turned around to where I'm thinking, 'Yeah, Europe may not be a bad thing.' "