An American Tragedy In Iowa

EVEN AIDS EXPERTS AT THE CENTERS for Disease Control can't recall anything quite like what's happened to the Goedkens, a middle-class Roman Catholic family from the farm country of northeastern Iowa. Since Vince and Mary Goedken celebrated their golden wedding anniversary in 1986, seven family members have died of AIDS; an eighth is HIV-positive. They are victims of America's "hemophilia holocaust": the spread of AIDs among hemophiliacs who received contaminated blood products. Hemophiliacs account for just 1 percent of the 200,000 AIDS deaths nationwide, But of the 20,000 surviving hemophiliacs in the United States, as many as 50 percent now carry the AIDS virus.

For the Goedkens, suffering had been a private matter. Six of the seven sons inherited hemophilia, almost exclusively a male disease; one died at the age of 11. Their childhood was a cycle of cuts and bruises, then profuse bleeding, then transfusions. The pain in their joints was so intense that at night they howled into their pillows. Their sisters used their own pillows to shut out the moans. Their mother tried to accept the affliction as God's will. As one by one the grown sons died of AIDS, the family tradition of silent stoicism persisted--reinforced by denial, and the fear of ostracism and discrimination. (Despite their low profiles, a family member says he and his wife were fired from jobs for no apparent cause.) Last week the silence ended with the publication of a devastating three-part series in The Des Moines Register. The taciturn Goedkens themselves were surprised at what some family members had endured and remembered. As they told their story again to NEWSWEEK, they found themselves remembering still more.

In the early 1970s, concentrated bloodclotting agents promised hemophiliacs a freer life. They could now stop a bleeding episode by injecting themselves, and four of the Goedken brothers eventually moved to Texas, far from the Iowa hospitals that had been their childhood lifeline. "Between 1980 and 1990, I took 253 infusions of Factor VIII," says Loras Goedken, 49, the last surviving hemophiliac brother. "Each one represented 20,000 different blood donors." By 1985, cases of the new plague called AIDS had been confirmed among hemophiliacs who'd received such blood products as Factor VIII. Loras and other hemophiliacs have sued four drug companies and the National Hemophilia Foundation, but he says money isn't his aim. "The only thing we can do," he says, "is make sure it never happens again."

Loras was diagnosed in November 1985, but waited till after Christmas to tell his wife, Jan. She, too, tested positive. A month later, at Vince and Mary's 50th-anniversary celebration, they thought Loras's brother Ernie seemed ill. His sister Clare also worried: Ernie and Carl didn't seem to be themselves. Steve, the nonhemophiliac brother, was troubled too. "Carl and Ernie were so gaunt," he recalls. "Carl had sores around his mouth."

Ernie died in March 1987. At the funeral home, morticians put a mesh screen over his body and placed the flowers so visitors couldn't get close. Nobody asked why. Two months after Ernie's funeral, Clayton Goedken was born. His father, Dennis (another brother who'd moved to Texas), and his mother, Karen, were both HIV-positive. Clayton lived to make a trip to Iowa, where Dennis and Karen wouldn't let anyone else change his diapers. In September, he was dead of AIDS at the age of 4 months.

The day Clayton died, the family learned that Carl had been put in a psychiatric hospital; he'd burned down his house in a fit of AIDS-induced dementia. He died in March 1988. Meanwhile, Clayton's parents, Dennis and Karen, had finally gotten married, a couple of months after their baby's death, on a beach by the Gulf of Mexico. But the despondent Karen left Dennis within weeks and he returned to Iowa. "He was so scared of the path the disease would take, how long he'd have to suffer," says Steve. "No solace could make it better." He died in October 1989. Leaving the bedroom where Dennis's body lay, his brother J.J. told Steve and Clare, "Well guys, I'm next."

But Jan was next. She was losing weight and behaving oddly -despite their medical bills, she ordered a giant panda and a doll collection from a TV shopping network. By spring 1990, Jan was hospitalized; Loras, as he'd once promised, brought her home to die. He'd always told her to fight, but on April 18 he whispered in her ear that she could give up; she died the next day. In March 1991, Dennis's estranged wife, Karen, died in Texas; in Iowa, J.J. was failing. By now the family secret was out in their hometown. At first wild rumors spread--some said everyone in J.J.'s family was infected-but in time the town rallied around him. In July, Sacred Heart Parish threw a benefit pancake breakfast for him, and J.J. was well enough to greet friends at the door. On the first of August--his wife Linda's 49th birthday--he died.

Loras Goedken now lectures several times a week. "I promised Jan I would do everything possible to educate the public," he says. Recently at a Baptist church a woman suggested AIDS was a sinners' disease. "Maybe," he replied, "this is a disease God has set upon the earth to see how compassionate human beings are." Steve and Clare see a homelier lesson in their brothers' deaths. "They kept telling us, 'Enjoy your families'," Clare recalls. "'Spend all the time you can together'." Like Loras, they've told their story to convince others that AIDS is a disease, not a moral issue. "This could have happened to anybody," says Clare. "We know. It happened to us."

Born 11/19/44; diagnosed HIV-positive in 11/85. Wife, Jan, born 1/17/40, died of AIDS 4/17/40, died of AIDS 4/19/90.

Born 11/15/54; died of AIDS 10/21/89. Wife, Karen, born 1/26/60, died AIDS 3/28/91. Son, Clayton, born 5/6/87, died of AIDS 9/19/87.

Born 4/23/60; died 8/27/71 of complications from hemophilia.

Born 6/22/51; died of AIDS 3/14/88.

Born 9/21/49; healthy.

Born 5/23/40; died of AIDS 3/15/87.

Born 11/21/38; died 8/1/91 of AIDS.