ALESTINE, Ark. - No. 57 on Calvary Christian School's football team stands at least a foot shorter than most of the other players, and his parents cringe as the coach sends him onto the field. To their relief, he's not carrying the ball - only the water to cool the bigger boys on this sultry Saturday night.
The Calvary Eagles lost the game, 28-6, but just suiting up was a victory for 12-year-old Zack Billingsley. His father and his doctor were against it, but his mother, usually the nervous one, gave in and said her son could play.
''We have to let him be a boy,'' Kathy Billingsley said, ''and live a normal life.''
Medically, Zack never has been normal and never will be. At three weeks, he was diagnosed with a rare, inherited disorder called adrenal hyperplasia. Zack's body can't produce cortisol, a hormone required for normal growth, kidney function, blood pressure, and fighting infection. A simple virus - or a sports injury - can quickly turn into a life-threatening condition without his medication, which he takes three times a day.
Managing Zack's disease would test the physical, emotional, and financial resources of any family. It is worse for the Billingsleys - proud, middle-class farmers on this drought-parched acreage in the Arkansas delta - because they bear the terrible burden of wondering what more they could have done to save their 13-month-old daughter, Katy, from dying of the same disorder in 1990.
They are haunted by one of the possible answers: Health insurance.
If presidential candidates Al Gore and George W. Bush were to sit at the Billingsleys's kitchen table tonight instead of debating in Boston, they would get an earful of what working families fear, loathe, and want from America's health-care system. Certainly, they would come to appreciate this couple's 12-year struggle with public agencies and private insurers to get access to the kind of health coverage and services they believe all children, and especially ones with special needs and chronic conditions, deserve.
Bush and Gore have their plans: Bush has proposed $2,000 health-care tax credits to help working families buy insurance. Gore would let middle-class parents purchase less expensive insurance through the Medicaid program. Both candidates have brought their message to Arkansas, which President Clinton easily carried in 1992 and 1996. But it is a toss-up state this year.
''We're not wanting something for free,'' said the shy and soft-spoken Dan Billingsley, who said he is wary of politicians promising to expand the government's reach. ''We want affordable health insurance we can buy. But they come around here and gouge us on the rates, and that just doesn't seem fair.''
Last year, the premiums on the family's private health insurance shot up nearly 100 percent - from $333 to $642 a month. They equaled the mortgage on their tidy, comfortable ranch house 5 miles outside the one-stop-sign town of Palestine. The premiums were unexpected add-ons to the monthly car payments, credit-card bills, and tuition at the small, parochial school where Zack gets a little extra attention. And it was a rate increase the Billingsleys simply could not absorb for long with rice, soybean, and wheat prices in a free fall and drought ruining their crops.
But if the alternative was compromising the quality of the medical care that keeps Zack well and active - the quarterly appointments with specialists in Little Rock, the periodic blood tests and bone measurements, the regular and emergency visits to the local pediatrician - that too, was out of the question.
''I've been through it all,'' Kathy Billingsley said, relating the painful story of how her little girl slipped into adrenal shock, was airlifted to a Memphis hospital, and spent 11 days on a ventilator before she died. ''I don't think my husband and I should have to worry about not having the money to take Zack to the doctor, and I don't ever want to feel too ashamed to see a doctor because we owe him money.''
Kathy Billingsley was able to extend her health-insurance benefits from a job to cover the births of her children. By the time the policy expired, both Zack and Katy had been diagnosed with adrenal hyperplasia, and no insurer would cover them with their preexisting medical conditions.
A month before Katy's death, Kathy Billingsley canceled an appointment with a pediatric urologist because she didn't have the money or insurance to pay him. Katy's autopsy revealed an underlying urinary-tract infection.
After Katy's death, the Social Security Administration classified both children as ''disabled'' and in 1991 began providing Zack with a monthly check and health insurance through Medicaid. The catch was that the Billingsleys's income couldn't go above a certain level; they weren't allowed a savings or retirement account, and they couldn't buy property.
''Until the day I die, I will not forget the caseworker telling me, `If your husband will quit working, you could get Medicaid, a housing allowance, and food stamps,''' Kathy Billingsley said. ''That's not who we are. We try to pay our own way. We didn't want a government handout. We just wanted health insurance for our son.''
The Billingsleys were notified in 1997 that Zack's Medicaid benefits were being cut off because their income was too high. And, they were told, they owed the government about $3,000 in disability overpayments. A year later, Zack was terminated from a special Medicaid program for children who aren't poor but are disabled because, program administrators said, Zack's condition was stable.
That was the last straw for Kathy Billingsley. In her view, private insurers were penalizing them because Zack was sick, and Medicaid was penalizing them because Zack was well. In March, she wrote six-page, longhand letters to the governor and her congressman and US senators, imploring them to help her son and ''the thousands of Zacks out there'' who need health insurance.
With a nudge from GOP Senator Tim Hutchinson, Zack's Medicaid coverage was restored in July. Governor Mike Huckabee of Arkansas cited the Billingsleys by name when he testified July 12 on Capitol Hill in support of the proposed Family Opportunity Act. The legislation, sponsored by Senator Edward M. Kennedy, Democrat of Massachusetts, and Senator Charles Grassley, an Iowa Republican, would allow middle-class families with disabled children to buy into the Medicaid program at lower-than-commercial rates.
Today, the Billingsleys are counting their blessings. They have loving kin all over the county. The four wrecked trucks Dan bought and overhauled last year are bringing in extra money. Business is brisk at the resale clothing store Kathy runs. Their son is getting top-notch medical care. (Dr. Curt Patton, president of the Arkansas chapter of the American Academy of Pediatrics, practices in the next town, and former US surgeon general Joycelyn Elders has been Zack's endocrinologist at the university hospital in Little Rock).
And Zack is thriving. Save for his 4-foot, 6-inch frame and good manners, he's a typical adolescent who loves sports, computers, and hamburgers, and he takes his condition, his dependence on medication, and his ever-hovering parents in stride.
''I'm not disabled,'' Zack protested, flashing a sweet smile accented by deep dimples. ''I'm just extra small.''
Faithful Christians, the Billingsleys believe God has guided their family through difficult times and heard their prayers.
''God has a plan, and if you don't believe that, you can't carry on,'' Kathy Billingsley said.
''Without the inner strength God provided,'' her husband added, ''we couldn't have survived.''
Inside the local Assembly of God church where they worship, the Billingsleys recently joined members of the congregation as they rose and gave thanks for an answer to their fervent prayers. Outside, for the first time in three months, it was raining.
