1980’s: Hemophilia, HIV/AIDS, and Hepatitis C
In 1982, the Centers for Disease Control (CDC) reported the first case of HIV/AIDS among people with #hemophilia, and concerns began to grow that the blood supply was tainted. Despite warnings from the CDC, leaders in the hemophilia community encouraged patients to continue using clotting factor (more information below). In 1983, several manufacturers began the development of heat treated factor concentrate, after testing showed the process kills the HIV and hepatitis virus.
In the midst of fear and confusion, Ryan White and the Ray family emerged as spokespersons for those living with hemophilia who contracted HIV/AIDS, especially when Ryan and the Ray children were denied entry to school. After winning a court decision in 1986 that allowed the Ray brothers to return to school, their home mysteriously burned to the ground. Media coverage of this tragedy is often considered a significant event in the history of HIV/AIDS in the United States.
During the mid 1980’s, many hemophilia families became isolated due to fear of discrimination and persecution of being identified as HIV/AIDS positive. Other families with hemophilia turned to action and demanded information/answers on why this had happened.
Title: Infant Who Received Transfusions Dies of Immune Deficiency Illness
By: Harold M. Schemeck, Jr.
Date: December 10, 1982
Source: New York Times
The Centers for Disease Control in Atlanta reported yesterday that an infant who had received blood transfusions developed a serious immune-deficiency disease that has principally afflicted homosexuals.
The child had received multiple transfusions of blood and blood products, including a transfusion from a man who later proved to have acquired immune deficiency syndrome, called AIDS, The disorder has been linked primarily to homosexual men. The child died at the age of 20 months from infections related to the immune deficiency.
”This and continuing reports of AIDS among persons with hemophilia A raise serious questions about the possible transmission of of AIDS through blood and blood products,” said the report. 7 Cases Since July
Altogether, the Atlanta centers have documented seven cases of the immune deficiency disease in hemophilia patients since July. Five of the seven patients died. Four of the cases and an additional case described as ”highly suspect” were reported yesterday in a weekly bulletin.
”These additional cases provide important perspectives on AIDS in U.S. hemophiliacs,” the report said. ”Two of the patients described here are 10 years of age or less and children with hemophilia must now be considered at risk for the disease. The number of cases continues to increase and the illness may pose a significant risk for patients with hemophilia,” the report said.
Patients who suffer from hemophilia require frequent transfusions of a blood clotting factor from normal blood to stem their tendency to bleed copiously after the slightest injury. The need for the transfusions is particularly great for patients who have a classic form of the disease, called hemophilia A.
The infant who died at 20 months was not a hemophiliac. He required transfusions because an incompatibility between his blood and that of his mother had caused life-threatening blood destruction before birth. In this case it was possible to trace the identity of the donors, one of whom was a man later diagnosed as suffering from AIDS. Many Contribute to Factor
The blood clotting factor given to hemophiliacs is pooled from many donors. Therefore it has not been possible to prove any link between an acquired immune deficiency problems and specific donors.
The immune deficiency disorder, first detected in homosexual men less than two years ago, has more recently been found in heterosexual drug abusers who use hypodermic syringes and in some natives, mostly men, of Haiti.
The cause of the condition is unknown, but it is widely believdd to be infectious and probably caused by a still unidentified virus that might be transmitted sexually or through blood or blood products. Altogether, a total of 788 definite AIDS cases have been reported to the Atlanta centers .
The disorder came to public attention because some sufferers from the immune deficiency developed a form of cancer called Kaposi’s sarcoma, which had been extremely rare.
Click HERE to read this above medical bulletin from the National Hemophilia Foundation (circa 1983)
Click HERE to see a sample clotting factor recall from Cutter Laboratories (now Bayer Healthcare Pharmaceuticals circa 1983)
Click HERE to see the letter that was submitted to HHS for the approval of heat treated clotting factor
Click HERE to read another medical bulletin from the National Hemophilia Foundation (circa 1985)
*Documents courtesy of Barry Haarde
Title: Indiana Village Welcomes Ryan White to School
Date: September 20, 1987
By: George Esper
Source: Associated Press
ARCADIA, Ind. — Georgia Harmon and friends were holding court over coffee at a big round table in Donovan’s Tavern one Wednesday morning.
Jim Donovan Kinder, the owner of the place, refilled the cups every now and then. “It’s just a little hometown tavern where people can come and have coffee in the morning and visit,” he explained.
Some of the talk that day was about Ryan White, a 15-year-old boy with AIDS, who had received a warm reception as a new freshman at Hamilton Heights High School.
Ryan’s mother, Jeanne White, moved with Ryan and her 13-year-old daughter, Andrea, from Kokomo to nearby Cicero in early summer after her son’s condition worsened. She said she wanted him to live in a friendlier town and go to school with friendlier kids. Ryan had been barred from Western Middle School near Kokomo two years ago, after school officials learned that he had acquired immune deficiency syndrome.
Here in Arcadia, municipal supervisor Forest Hanna would not have been among those who greeted Ryan as a new student.
“I am not welcoming Ryan White, and I don’t even have kids,” said Hanna, who is sitting at the table. “To give one individual his rights over the population at the school–is that right? If hard evidence proves there is no danger, I would say yes.”
“Forest is the type of guy who takes you out to dinner if you buy,” chided Georgia Harmon. The banter between them is always good-natured. Harmon, a grandmother who friends say baby-sat half the people in Arcadia, says she thinks Ryan has a lot of guts.
“It doesn’t bother me,” said Mark Kennett, also at the table. “A lot of people around here feel like Forest, but they won’t be raising a bunch of stink. I got more worries than Ryan White going to school.”
Kennett is concerned about losing his job. The casting foundry where he works is about to shut its doors.
Ryan’s presence has stirred little outward passion in this sleepy town of 1,801 people. Most of the school’s 650 students have accepted him. Indeed, when one youngster suggested that Ryan should be tutored at home, Amy Wilson, a 16-year-old junior, retorted: “That’s stupid!”
“I’m really glad he came,” she said. “I wish I had classes with him so I could talk to him and see what kind of a person he is.”
Education Level Cited
Tony Cook, the principal, said the community accepted Ryan because “they are an educated group of people and they have wrestled with this for three or four months and consumed as much as they could about it.” He estimates that perhaps 40% of the students’ parents are college graduates or have had some type of higher education.
Many Arcadians, such as 60-year-old Paul Conaway, who grows corn, soybeans and wheat on a 1,200-acre spread near town, have lived here all their lives.
“I got no kids in school. I just stay out of it,” Conaway said of the Ryan White issue.
Arcadia, an hour’s drive from Indianapolis, has no industry, but many of its people work in the factories in neighboring towns.
Arcadia seems to live up to its name as defined in Webster’s New World Dictionary: a place of rural peace and simplicity. The only noise heard all day is the whistle of the train that crosses Main Street. Excitement consists of the shuffleboard competitions at Donovan’s on Wednesday nights and Saturday afternoons.
Everyone knows everyone else, and where and how they live. Bob Wisher, 60, who runs a meat market with his son, makes it a point to know all of his customers. For each, he has a special greeting:
‘Hello, Ron. How are you? It’s beginning to feel fallish, isn’t it?”
“Hello, Cath. Getting ready for fall?”
There is order in Arcadia. The town hall is closed on Wednesdays and the clerk-treasurer, Betty Shields, can be found at home doing laundry. A 41-year-old mother of three, she has lived here most of her life.
“I just like the small-town atmosphere,” she said. “You don’t have to worry about locking your doors. The kids can walk up and down the street.”
Two of her children, Michelle, 15, a freshman, and Don, 16, a junior, go to school with Ryan White.
“I’m not for it,” she said of Ryan’s admission to the school. “They don’t know that much about the disease. You can’t go to court. The courts said he can go to the school, so what can you do?”
She said that she feels sorry for Ryan, but still, she told her children to “just stay clear of him.”
*Photo courtesy of Jeanne White Ginder
Assisting and Advocating for the Bleeding Disorders Community