Kathy Gerus-Darbison remembers the silence. It was the silence she received in response to her questions after she was diagnosed as HIV-positive. It was the silence she was forced to be a part of when she was instructed, “Don’t tell anyone.” In that silence, Kathy heard secrets, fears and intolerance. But this silence gave birth to many of the voices still heard in the bleeding disorders community today.
Our community is commemorating the National Hemophilia Foundation’s (NHF’s) 60th anniversary. After all, there is much to be proud of and much to applaud. But this is also a time of reflection as we remember the crisis the community faced more than 20 years ago, with contamination of the nation’s blood supply by the HIV, hepatitis B and C viruses and the subsequent loss of lives of many individuals with hemophilia in the early 1980s. We recall not only their loss, but the courage they personified and the contributions they made to the bleeding disorders community. The reforms they advocated for are still saving lives today.
“In the period between 1981 and 1984, more than 50% of the population with hemophilia in the United States had already become infected with HIV,” says Bruce Evatt, MD, a hematologist and leading researcher at the Centers for Disease Control and Prevention (CDC) from 1976 through his retirement in 2004. “For those with severe hemophilia, the numbers were even higher, approximately 90% to 95%. By the time we started keeping track, a lot of people had already died.”
Evatt was the doctor who answered the phone at the CDC in early 1982 when a Florida physician called to report that a man with hemophilia had died of Pneumocystis carinii pneumonia. This unusual manifestation proved to be a hallmark of the progression of the disease, typical of those who are immunocompromised from the virus. Evatt recalls when AIDS was identified as a bloodborne disease and when it was shown that HIV could be inactivated through the heat treatment of human plasma-derived clotting factor concentrates. But, before that process was implemented, the blood supply was compromised due to a significant lack of oversight, which allowed contaminated blood to be donated without testing. After the crisis, routine testing became mandatory. However, many people in the community had already been infected before these safety regulations became standard.
As the 1980s progressed, increasing numbers of people in the bleeding disorders community discovered they were HIV-positive, and a range of emotions and reactions swept the community. Some reacted with anger, others with depression and still others with confusion. Thousands of people with hemophilia who contracted HIV/AIDS through contaminated blood products or infected partners have died. Some, however, are still living with the virus more than 20 years after their diagnosis. Their stories not only give faces to those vague numbers, but also inspiration. The community has come a long way in the past two decades, learning from the crises it has endured by listening to the voices of people in its midst and moving forward with renewed vigor to correct past mistakes and safeguard the future.
“The bleeding disorders community remains vigilant and focused in our efforts to protect the nation’s blood supply because of the profound effect it has had on our community’s health,” says Val Bias, NHF CEO. “Because of our community’s unique dependence on blood and blood products, we have developed advocacy and monitoring strategies in pursuit of safe blood supply for all Americans.”
Sounds of Silence
“When I met my husband in 1981, people with hemophilia were coming down with weird diseases, and nobody talked about it,” says Gerus-Darbison, 50, an educator from Michigan. In 1983 she married Michael Gerus, her first husband, who had severe hemophilia A. A year later, the couple had a baby, Stephanie. According to Kathy, life was good for the young family. Nevertheless, Michael kept an eye on reports on the new, unidentified illness that was making national headlines. Although he didn’t want to scare his wife, Michael had begun to make a connection in his mind between this illness and his hemophilia.
In 1985, the family was invited by the Detroit Hemophilia Treatment Center to take part in the National Transfusion Safety Study, funded by the National Institutes of Health (NIH), which was designed to calculate prevalence of exposure in the community. “It didn’t seem unusual to us. He had been studied all his life. We thought we were helping medical science,” Gerus-Darbison recalls. “I had no fear, because I had no idea what was going on.”
The couple was then tested at the hemophilia treatment center (HTC) at Children’s Hospital of Michigan, the Detroit facility where Michael was usually treated. Gerus-Darbison recalls that the staff drew blood and asked some questions. “We weren’t told what we were being tested for,” she says. “They didn’t tell people if they tested positive; so many wives like myself and many sexual partners were being exposed to HIV, and no one said a word.”
Gerus-Darbison was told she would be contacted six months later for follow-up. After no one called, she decided to take matters into her own hands. When she called the HTC, she was told that all of the subjects needed to come back.
“I was told there was absolutely no hope, and that I needed to keep it a secret because people were losing their jobs and being kicked out of their homes,” Gerus-Darbison remembers of learning that both she and her husband were infected. “I always played it safe my whole life. But I was given a death sentence the day in December 1985 when I went back to the center in Detroit.”
For Gerus-Darbison, part of a close-knit clan that shared everything, the silence and the secrecy were daunting. She was 27 and had never felt more alone.
Going Through the Process
“You’re HIV-positive,” the doctor at Vanderbilt University in Nashville, Tennessee, told Dwayne Whitis, who was a 19-year-old University of Kentucky college student when he received this diagnosis in 1986.
In addition to regularly treating his severe hemophilia A with clotting factor concentrate, Whitis had been in a car accident in 1983 and received a large amount of blood products. Some of them contained HIV.
Whitis went back to school and into hiding. “I stopped going out, stopped dating and stayed indoors all the time,” he says. After college and a short-lived marriage, Whitis took a job in New Jersey. But soon afterward, he started feeling the effects of his illness.
“I felt sick and alone. I thought it was the beginning of the end,” Whitis says. “I moved back to Kentucky, moved into my parents’ apartment and got ready to die.”
After six months, Whitis’ mother had had enough of her son’s attitude. “You’re not dead yet. Go out and start doing something,” Whitis recalls his mother saying.
Whitis decided that he wanted to live—and passionately. He started volunteering at the NHF chapter in Louisville, and was asked to be summer camp counselor. “I got to work in the community, and I was able to give back in the same place where I had received so much as a kid,” he says.
To this day, Whitis, who now lives in Seattle, continues to volunteer. He helps out at Camp Tapawingo, the summer camp run by the Hemophilia Foundation of Oregon.
Taking the Lead
“Richard was a natural leader, one of the first men in the country to become involved in creating MANN, the Men’s Advocacy Network of the National Hemophilia Foundation,” says Megan Davis, 50, of the man she married in 1977 when she turned 20. She now lives in Lacey, Washington, and works in information technology.
“Richard could advocate for others and for himself,” she says. “He understood organizations and could speak their language.”
Richard received his HIV diagnosis in January 1987, when he was 31 years old. He had also taken part in the NIH-funded National Transfusion Safety Study and was told he had developed antibodies. “We hoped that just meant he had been exposed,” Megan says. “We got the news when they cultured everybody who was positive for antibodies.”
Because the couple was aware of the concerns about the blood supply and possible exposure, Megan herself was tested for HIV antibodies throughout her second pregnancy, and daughter Georgia was tested soon after her birth in 1986. “There was a concern, but neither one of us ever developed HIV,” she says.
Like Whitis, Richard’s reaction was to withdraw from his usual flurry of activity. “He talked about going off and dying in a corner by himself. He didn’t want to put us through all this,” Megan says.
But, as time progressed and Richard continued to remain healthy, the family decided to keep living. In June 1988, the Davises bought a new car and headed to Disneyland. “We thought it might be the only vacation we’d have a chance to take,” Megan says.
Instead, Richard lived until 2005 and made his life matter. In 1990, Richard was in the first support focus group, part of an NHF initiative that led directly to the creation of MANN in San Francisco. “The guys with HIV and hemophilia were brought together to see what they needed. They were infected and infectious,” Megan says.
Richard threw himself into the mission of the group: determining how to stem the spread of HIV. “We were an established, stable community of people who had long-term sexual relationships, because many were in marriages. The men were lifelong patients who could be identified, accessed and followed. We were, in a sense, the perfect test group for medical researchers who could experiment with us and try things out to see how it worked in terms of risk reduction and safer sexual practices,” Megan says.
Networking with others who were going through the same thing proved healthy for the couple. Through her husband’s involvement with MANN and her own outreach to other women, Megan learned how to keep herself safe. The couple also benefited from the sense of purpose that came with reaching out to others. Through their activities, they learned they were not alone.
“NHF was deeply involved, and the CDC and other federal agencies also funded network activities,” Megan says. She and Richard traveled across the country, establishing programs to provide activities, information and peer support.
A Tale of Two Brothers
When his first son, Greg, was born with severe hemophilia A in 1963, Paul Haas, a former NHF board chair, and his wife, Rosie, were taken unaware. Neither family had a history of bleeding disorders. “We were totally surprised, but we learned to deal with it,” Haas recalls. When younger son Tim received a similar diagnosis in 1969, the family took it in stride.
The Haas family believed in education and made a point of learning all they could about their sons’ bleeding disorder. “Our family took the position that they were boys who happened to have hemophilia. We allowed them to be boys,” says Haas, professor emeritus of economics and distinguished teaching professor at Bowling Green State University.
When they first heard about the new disease affecting those with hemophilia, the Haas family wanted to know more about it. They didn’t feel angry or afraid; they still believed education was the best approach to any curveball life might throw.
“We followed the medical advice at the time, which said not treating with factor was more dangerous than treating,” Haas says. “No one knew how dangerous and widespread this would turn out to be.”
The family assumed that Greg and Tim had beaten the odds. They were alive, well, growing and thriving. Their parents held out the same positive attitude when the boys learned they tested positive for the HIV antibodies. “In the early stages of the HIV crisis, when we did not know what this was all about, our attitude was the same. This was just something else we had to beat,” says Haas.
As the death toll rose among people with hemophilia that the Haas family knew, they maintained their positive attitude. “I didn’t allow myself to focus on death,” Haas says. “I focused on what we could do.”
The brothers decided to share HIV information with others infected with the virus, through the Committee of Ten Thousand (COTT). Greg became a hemophilia-AIDS educator in the community and edited COTT’s quarterly publication, The Common Factor. Tim later joined the magazine’s staff as a creative writer. During their tenure, the magazine became well respected. “For a while they were known as my sons, but in time I became known as their father,” Haas says. “That was a wonderful thing to happen.”
Tim was 25 years old when he died in November 1994; Greg died seven months later at 32. Both succumbed to complications of hepatitis.
Lobbying for Change
Jim Romano, 32, does not have a bleeding disorder, but hemophilia can be traced back four generations in his family. In 1993, he learned that both his maternal uncles, Ed and Mike Burke, were HIV-positive as the result of using contaminated clotting factor concentrate to treat their severe factor VIII deficiency.
The brothers dealt with their HIV in different ways. “Uncle Mike didn’t want anyone to know, while Uncle Ed threw himself into finding answers,” Romano recalls. Ed became an activist for people with hemophilia and recruited his nephew to join him.
In February 1995, Ed Burke went to Washington, DC, to lobby for a bill for those with hemophilia living with HIV. “The bill was the Ricky Ray Hemophilia Relief Act, which proposed establishing a trust fund for persons with bleeding disorders who were infected with HIV because of the contaminated blood supply, or for family members who were subsequently infected,” Romano says. The legislation was named for the late Ricky Ray, one of three brothers with hemophilia, all HIV-positive. The Ray home in Arcadia, Florida, was gutted in a suspicious fire just days after the family won a legal battle to allow the boys to attend public school. The family went on to become vocal activists, and their story shed a national media spotlight on HIV in people with hemophilia.
Romano originally accepted Uncle Ed’s invitation to Capitol Hill, thinking it wouldn’t amount to much more than a day away from campus and a free lunch. “That first day, we went to Capitol Hill and met with a staffer for Congressman Bob Borski of Philadelphia,” Romano recalls. “As we talked, I started to realize how important this was.”
NHF also recognized the importance of the legislation and committed time and funding to its passage, even though an initial evaluation indicated the probability of enactment was only 10%, says Ray Stanhope, 53, chair of the NHF board. “We hired a lobbyist in DC, then spent four years getting hearings for it and finally getting it passed,” says Stanhope, of Sugar Land, Texas, a former product test engineer now retired from Texas Instruments.
“I went to DC, lobbied several times and visited Tom DeLay, who was the majority whip at the time,” Stanhope says. “For those of us infected with HIV, this bill was something the community needed and wanted.” Before the legislation passed in 1998, compromises were made, including the exclusion of those infected with hepatitis C without HIV and siblings of already deceased relatives. “We had to work the numbers and were told to keep it under the $1 billion mark,” says Stanhope. Eventually, $800 million—$100,000 to each affected individual or surviving relative who applied—was paid out.
Passage came too late for Romano’s Uncle Mike, who died in 1997. But Ed Burke and his nephew are still politically active, working on behalf of the bleeding disorders community. Romano hopes the family tradition continues in the next generation. His daughter, Rachael, attended this year’s Virginia Lobby Day in January. She was three months old at the time.
“I want her to follow in my footsteps,” Romano says. “We owe it to our family to be involved with this community.”
“When Ryan White passed away in 1990, the Hemophilia Foundation of Michigan contacted us and asked my family to go on the news to talk about the impact of his death on the community,” says Gerus-Darbison. “We had been keeping secrets a long time already. We owed this to Ryan White, who was brave enough to educate the whole country. We didn’t want him to die and his legacy be lost.”
Gerus-Darbison also decided she needed to reach out to other women. After going into a deep depression, she sought counseling at the local HTC. There she met Danna Merritt, MSW, who suggested she start a support group for women in the community.
Merritt connected Gerus-Darbison to other women, including Bea Pierce, who was instrumental in starting support sessions for women at the national meetings. Pierce, a nurse, is married to physician Glenn Pierce, former NHF president. The women organized an ongoing support group in the Detroit area.
“We had 18 or 20 women at that first meeting. There was so much power in that room,” Gerus-Darbison says. From this seed group, the Women’s Outreach Network of the NHF (WONN) blossomed. Gerus-Darbison became its co-chair.
Since the HIV/AIDS crisis, activism in the bleeding disorders community has increased, and the voices are no longer silent. “The people who are still around have seen and heard and learned you have to speak up,” Gerus-Darbison says. “That’s the only way to make a difference.” She currently chairs NHF’s Blood Safety Working Group and was the founder of the ClotNot Doll Project for women with bleeding disorders and the STITCHES doll project for women with HIV.
Gerus-Darbison is still speaking out, giving AIDS workshops at colleges in her region and passing on her activism to the next generation. Her daughter Stephanie, now 24, wrote the book My Parents Have HIV/AIDS: Some Advice From an 8-Year-Old.
“Things were great when I met my husband,” Gerus-Darbison says. “It was the new dawning of hemophilia care. Being able to have your medication at home and infuse yourself—that was incredible.” Nobody knew that the products that made life so much easier would be the cause of their own deaths one day.
“We didn’t get these new products or clean products by accident,” Gerus-Darbison adds. “Lots and lots of people had to die for that to happen. I’m not going to forget that.”
[Steps for Living: Blood Safety and Universal Data Collection]