IT WAS FEBRUARY 1986, AND A FREEZING WIND pounded Loras Goedken’s face as he and his wife, Jan, climbed the snowy path to his parents’ house in Monticello, Iowa. Still, Loras, who had moved to Houston 10 years earlier, was happy to be back. His parents were celebrating their 50th anniversary in the home where they had raised 11 children. The family had always been close, partly for a reason not of their choosing. Six of the seven Goedken brothers were born with hemophilia, which prevents blood from clotting properly. The disease, which made them chronically susceptible to bleeding, had drawn them together. “We were like a well-designed machine,” says Loras, 52, “the older ones looking after the younger.”
All the siblings would be there for the celebration: J.J.; Steve and Clare from Iowa; Judy from New Mexico; Janet and Mary Joan from Australia; and Ernie, Carl and Denny from Texas. (Tommy, the youngest, had died in 1971, at the age of 11, from internal hemorrhaging after an appendectomy.) As happy as he was to see them, though, Loras was hiding a terrible secret. Weeks earlier, he and Jan, his second wife, whom he had unwittingly infected, had tested positive for the AIDS virus.
What Loras didn’t know that weekend was that four of his brothers, J.J., Ernie, Carl and Denny, had also been diagnosed HIV-positive, each keeping it secret from the others. Like other hemophiliacs, they had depended on a clotting agent called Factor 8, derived from the blood of thousands of donors and self-administered by injection. Tragically, from at least 1979 until 1985, when drug companies began heat-treating blood products, thousands of Factor 8 batches had been tainted with HIV. Over the next five years, Loras would bury his wife, four brothers and Denny’s longtime companion and infant son, making the Goedkens the American family perhaps most devastated by AIDS.
“So many times I’ve asked, why did this happen to our family, a really loving, caring family,” Loras says. “We survived hemophilia, then to have this thing thrust on us. It just wasn’t fair.” Last November in U.S. district court in Chicago, the four leading makers of Factor 8—Rhone-Poulenc Rorer Inc. of France, Bayer AG of Germany, Alpha Therapeutic Corp. of Japan and U.S.-based Baxter International Inc.—agreed to settle a class-action suit brought by some 6,000 infected hemophiliacs for $640 million. (About half of the nation’s 20,000 hemophiliacs have contracted the AIDS virus, and more than 3,000 have died.)
The victims claim the drug companies knew as early as 1982 that AIDS was a blood-borne disease and that hemophiliacs who used blood products were at high risk. But based on information they say was available at the time, the companies and the National Hemophilia Foundation assured hemophiliacs the risk was minimal. In a deposition, a foundation official said NHF believed a recall of Factor 8 would increase its cost and decrease supply, leaving some victims to die. (The companies deny guilt, maintaining they could not have foreseen such a unique threat.) Judge John Grady has given the parties until May to iron out differences, but if he approves the settlement, each victim or his survivors will receive $100,000. That is cold comfort for the Goedkens. “All the money in the world won’t make any difference,” Loras says. “I’d gladly give 10 years of my life to have my wife and brothers back.”
Remarkably, Loras Goedken has come through his ordeal with faith and spirit intact. After a time of anger—at God, at the drug companies, at the gays he believed were responsible for infecting the blood supply—he has found a new life ministering to AIDS victims. At one point in his grief, Loras admits that he fantasized about running over gays with his car. But in 1986, after learning that his wife was HIV-positive, he attended an HIV support group with her. The first time Loras heard a gay man speak, “I started to get up and really light into him. But I sat right down,” he says. “Tears started rolling down my cheeks. I realized they’re going through the same thing.”
In 1986, Loras started a support group for hemophiliacs with AIDS and their families. He is the only survivor of that group—and of another he founded in 1990, made up of five heterosexual couples with HIV. Though his joints are badly damaged from hemophilia—he cannot bend his elbows or raise his arms and has two artificial knees—he has covered 200,000 miles since 1991, speaking to schoolchildren to plead for compassion toward-people with AIDS. “I’m very proud of him,” says Eric, 26, his son from his first marriage. “He’s just too stubborn to get sick or let it all get to him.” Says Dr. Phil Johnson, Loras’s internist since 1989: “A lot of people would have become bitter and withdrawn. He’s replaced bitterness with love.”
The retired vice president of a Houston auto-leasing company, Loras was the third son born to corn farmer Vince Goedken, who died in February at 89, and his wife, Mary, now 82. Vince had been elated when their first child was a boy, born in November 1938 and named John Joseph. But when doctors tried to circumcise the infant, known as J.J., he nearly bled to death. The couple consulted a specialist in Dubuque who diagnosed hemophilia, an illness that primarily affects males. Mary says doctors assured her that J.J.’s condition didn’t mean future sons would also be hemophiliacs. In any event, Loras says, birth control “was out of the question” for his staunchly Catholic parents. So Mary had more children—and kept giving birth to hemophiliac sons. Only Steve, the sixth oldest, now 47, was spared. “Mom accepted hemophilia as God’s will for our family,” Loras says.
But hemophilia was also expensive. Refused health coverage because of the boys’ condition and weighted with hospital debts, Vince sold the family farm and went to work as a toolmaker in Monticello. The boys helped out with paper routes and, despite their illness, played basketball. “Each of us made a conscious choice not to let hemophilia take over our lives,” Loras says. If one of the boys would bang an arm or a knee, triggering a painful internal “bleed,” Mary would wrap ice packs around his aching joint and drive 64 miles to University Hospitals in Iowa City, where he would get a plasma transfusion to clot the blood.
Then in 1972, Factor 8 came on the market. Scientists had found they could isolate and freeze-dry the clotting factor in blood, then reconstitute it with saline solution. Without leaving home, hemophiliacs could inject themselves with Factor 8, readily stored in vials in the refrigerator. “It was like a miracle,” says Loras.
Factor 8 gave the Goedken brothers a chance at a more normal life. They got jobs, and three of them married and had children, all hemophilia-free. By 1983, however, news stories about AIDS began appearing. Loras wondered about the risk, but says, “AIDS was considered a gay disease back then.”
In early 1987, Ernie—who was divorced and had run a small printing company until his illness—suffered a series of fevers and pneumonia, lapsing into a coma for two days. Then 46, he shared an apartment in Austin, Texas, with his bachelor brother Carl, 35, a maker of stained-glass ornaments. When he recovered, his mother insisted he come home. On March 15, Ernie’s liver and kidneys shut down. “He was in so much pain, he begged to die,” says his brother Steve. He did, in a matter of hours.
Ernie’s death certificate, which listed a form of hepatitis as the cause, made no mention of AIDS. But at Ernie’s wake, the undertakers placed a lace net over the casket and positioned the flowers and kneelers in such a way that mourners couldn’t get too close to the body. “What the hell is this?” Loras recalls thinking. “I was furious at the undertakers.”
Unknown to Loras, on the day of Ernie’s funeral an overcome Denny had broken the wall of silence. Seated at the kitchen table with his mother and sister Judy, he burst into tears when the two started talking about the baby he and his girlfriend Karen Wilson were expecting. Denny, like Carl a craftsman in Austin, revealed he was HIV-positive and that he had passed on the virus to Karen. They feared the baby would be born infected too. “I didn’t want to believe it at first,” says Mary. Clayton was born in May 1987; by September he was dead.
Six months later—after Mary brought him home from Austin—Carl died in an Iowa City hospital. “I came home from Carl’s memorial service so angry,” Loras says. “I got up angry, went to work angry and went to bed angry.” Finally, Jan told him, “Loras, you can’t go on like this. Let’s take whatever time we have left together and make it special.” In October 1989, the Goedken family buried Denny, then 34. (Karen, his girlfriend, would die two years later.) Only after Denny’s funeral, when all the siblings gathered, did J.J., married with five children, and Loras reveal that they too were HIV-positive. “Don’t worry about us,” Loras said. “We’ll be all right. We didn’t think we’d live this long with hemophilia.” Then they hugged, held hands and recited the Lord’s Prayer together.
Back in Houston, Jan, a hospital secretary, was already failing. Married in 1978, she and Loras had been active and close, sharing a love of classic Thunderbirds, cruises and dancing the two-step. Now for days on end, Jan sat in a blue recliner, unable to lift herself out of the chair. When AIDS-induced dementia set in, she ran up hundreds of dollars in charges on a home shopping network. Loras was forced to sell two rental homes to pay debts and medical bills not covered by Jan’s insurance. (One day, when Loras was feeling particularly pinched after arguing with an insurer, a giant panda doll arrived, which Jan had ordered from a TV ad. Loras blew up. “Please don’t make me send it back,” Jan begged. Loras choked up. “Honey, you can keep it as long as you like,” he said. “You never have to send it back.” He still has that bear.) Beginning in March 1988, Jan ran high fevers and was repeatedly hospitalized. “One night, I walked into her [hospital] room and she didn’t recognize me,” Loras recalls. “It was like sticking a dull stake in my heart. I cried all the way home.” Jan died April 19, 1990, at home at the age of 50, after telling Loras, “I’m so sorry for what I’m putting you through.”
After J.J. died the next year, a friend suggested Loras read the Book of Job, the story of a good man tested by God with misfortunes. “Instead of asking, ‘Why me, God?’ I began to realize, ‘Why not me?’ ” Loras says. “I had to switch my thinking around.” Last summer, in honor of his volunteer work, city officials selected him to carry the Olympic torch through downtown Houston. Now on a new generation of AIDS drugs, Loras is symptom-free. For that, he credits a positive outlook and his faith. “If I stayed depressed, angry and guilty all the time, I wouldn’t last long,” he says. “I thank God for every day and ask for a few more.”