Life-and-Death Decisions Can Hinge on Fine Print : Health: Anguish grows when a family finds its insurance policy won’t cover newborn’s new heart.
When Quinn Kyles grows up, if Quinn Kyles grows up, if Quinn Kyles survives more than a few days or weeks outside his mother’s womb, perhaps he’ll someday wonder what the fuss and anguish over his birth was all about.
By then, American society may have solved the dilemma of how to cover the enormous costs of the kind of high-tech health care that can save Quinn, who prenatal tests show will have a serious heart defect when he is born.
Quinn, who has already been named even though he is not due until the end of the month, will almost surely die without an infant heart transplant. With a transplant, his chances of becoming a normal and relatively healthy little child are good.
The problem facing Theresa and Dwain Kyles, Quinn’s parents, is how to pay for the operation as well as the elaborate follow-up care it requires. The bill could come to as much as $500,000 in Quinn’s first year of life.
Some group insurance plans cover heart transplants. But Theresa Kyles’ employer, which provides medical coverage for both parents as well as their 3-year-old son, Chad, says her policy excludes the procedure. Theresa Kyles, 36, is the director of minority affairs for Northwestern University Law School here.
Only seven or eight years ago, there would not have been a controversy over Quinn’s fate because such a life-saving procedure was not possible at any price. But now it is, and the Kyles case is a poignant illustration of how medical advances can rapidly outpace the public’s ability to pay for them. At the same time, it serves as a reminder of a health care squeeze that can reduce life-and-death decisions to squabbling over the fine print in obscure legal documents.
“I said to Northwestern, ‘What you’re telling me is to go raise $500,000 or let my baby die and I really can’t believe that’s what you’re saying,’ ” Kyles recalled. “And they were just very matter of fact about it: ‘Well, Theresa, your policy speaks for itself.’ ”
Actually, the couple, who are both attorneys, claim the policy is anything but clear on the question of heart transplants and have threatened to sue Northwestern. Although the insurance plan is administered by Blue Cross/Blue Shield, Northwestern itself sets all the rules and pays claims out of its own coffers. Such so-called “self-insurance” plans are common with many employers.
The standoff is fraught with ironies, not the least of which is that the only facility in Illinois that performs infant heart transplants is Chicago’s Children’s Memorial Hospital, one of a network of area hospitals known for cutting edge medical technology that are affiliated with Northwestern’s own medical school. Every doctor on the Children’s transplant team is also a member of the Northwestern Medical School faculty.
Another fact to puzzle over: The Illinois Department of Public Aid says that Medicaid would probably pay for the operation were Theresa Kyles an impoverished single welfare mother. But because she is married, employed and has her own insurance, Kyles is not eligible for public assistance.
Citing potential litigation, Northwestern officials declined to comment on the situation. However, spokesman Chuck Loebbaka read a brief statement that expressed sympathy for the family’s plight, said Northwestern was working “to provide information and other assistance” to the family and noted that the law school was conducting a fund-raising drive on their behalf.
The silver lining in all this is that Quinn is going to get his heart transplant, at least assuming a suitable donor heart is found. In the midst of publicity about the situation, administrators at Children’s Memorial Hospital earlier this month agreed to authorize the procedure while deferring billing of the family for up to a year while they haggled with Northwestern. Despite its affiliate relationship with the university, the hospital is technically a separate corporate entity and has its own board of directors that can make such decisions independently.
And even if the couple should lose the fight, they’ve already managed to raise about $130,000, thanks to the generosity of some influential friends. Rock star Stevie Wonder, whom Theresa Kyles once worked for as an administrative aide, rushed to town after hearing the news about Quinn and performed a benefit concert. Several wives of Chicago Bear football players also arranged an auction of sports paraphernalia. And a local bank has established a fund for public contributions (Share Your Heart for Quinn Fund, Seaway National Bank, 645 E. 87th St., Chicago, Ill. 60619).
Until little more than a month ago, there was no reason to suspect anything was wrong with Quinn. Even in the womb, he seemed strong and rambunctious. Theresa Kyles would joke to friends that the baby kicked so hard that he felt like a SWAT team member trying to break down a door on a drug bust.
Then, on Oct. 16, more than seven months into her pregnancy, she went in for a routine ultrasound and her world turned upside down. Quinn, the doctor found, appeared to be suffering from a condition called hypoplastic left heart syndrome.
In essence, the left ventricle of the baby’s heart, the part responsible for pumping blood through his body, had failed to develop properly. It is an extremely rare condition, affecting somewhere between 1 in 10,000 and 1 in 100,000 babies. Without a heart transplant, Kyles was told, Quinn would not live more than a month to six weeks after birth.
Stunned, the parents were quickly steered to the transplant team at Children’s Memorial Hospital and had begun making arrangements for the procedure when they got their second blow. Northwestern said it would not pay.
Like many employers, the university offers its workers a smorgasbord of different medical insurance programs to choose from. In picking, Kyles and other employees must rely on summaries of what the various plans do and don’t cover. The lengthy and technically worded policies themselves are not typically made available until well after the insurance enrollment period is over.
Long before she learned about Quinn’s condition, Theresa Kyles had opted for coverage under the most expensive and comprehensive of the Northwestern plans. Dwain Kyles could also have bought insurance through his employer, but decided against it because that plan was virtually identical to that offered by Northwestern.
In retrospect, the insurance summaries could become the basis for a lawsuit against the university, according to Richard Kuhlman, a lawyer representing the family. Kuhlman said the summaries of the more modest plans offered by Northwestern all specifically stated that heart transplants were not covered.
But the summary for the plan picked by the Kyleses said nothing about transplants at all. That omission left the impression that transplants were to be covered, Kuhlman claimed. In any event, he argued, even the language in the master policy was ambiguous when it came to transplants.
“What we’re seeing on a whole number of fronts is that the middle class is facing the kind of pressure that can kill,” Kuhlman declared. “She has an insurance policy that she thought would cover the problem. It’s as good or better than most middle-class people would have by way of health insurance and lo and behold there’s a loophole in it.”
Though the range of coverage differs widely between insurers, most companies are reluctant to pay for procedures that are considered experimental. But the success rate for infant heart transplants has been so good that most insurance companies no longer regard it as experimental, according to Anita Rockwell, a spokesman for Loma Linda University Medical Center in California, which pioneered the procedure in 1985.
Rockwell said Loma Linda had performed approximately 120 transplants similar to the one that Quinn would need and the long-term survival rate is hovering around 80%. The recipient of the first such transplant, a little boy suffering from the same ailment as Quinn, is now 6 years old and “doing terrifically,” she said.
Arthur Caplan, director of the Center for Biomedical Ethics at the University of Minnesota, said cases such as Quinn’s demonstrate a need for regulators to force both Medicaid and private insurers to set clear-cut, unambiguous and upfront standards about what they will cover.
Procedures such as heart transplants may be expensive, he said, but they are needed so rarely that they do not pose a serious fiscal threat to most health care plans. Far more damaging, Caplan argued, are costs for routine procedures that are spiraling out of control.
“When you’re looking at a $9-billion-a-year (nationwide) bill for ultrasounds, that’s what insurance companies don’t want to see,” Caplan explained.
While the money issue looms heavily over the family, it pales in comparison to the gut-wrenching question mark that hangs over Quinn’s life.
Theresa Kyles goes nowhere without a beeper these days. If a heart should become available before she gives birth, the beeper will go off, she will rush to the hospital and doctors will induce labor or take Quinn by Cesarean section. If Quinn is born before a donor is found, he can survive for about 45 days on life support while the search continues.
“People keep asking me, ‘Have I found a donor yet?’ ” Kyles said. “A heart is not a kidney. There are no hearts out there without a body left. It’s impossible for me to sit here and pray for somebody else’s baby to die. I just give that up to God.”
If Northwestern relents and pays the bills, Kyles said she wants to turn the fund-raising money over to the hospital to help defray the costs for the next ailing child whose parents cannot muster the money for a transplant.
Times researcher Tracy Shryer contributed to this article.
