by Kenneth Orr
Mr. Orr is a Presbyterian minister living in Glendale, California. He has a hemophilic son.
This article appeared in the Christian Century, March 9, 1988, p. 247. Copyright by the Christian Century Foundation and used by permission. Current articles and subscription information can be found at www.christiancentury.org. This material was prepared for Religion Online by Ted & Winnie Brock.
Because of the need for constant blood transfusions, about 90 percent of severe hemophiliacs have been exposed to the AIDS virus. Perhaps as many as 50 percent of these will contract the disease.
It seemed an endless wait between the test and the medical report. Weeks crept by before David knew if he had tested positive for AIDS antibodies. A dark cloud hung over him. By 1985 hemophiliacs across the U.S. -- including David -- wanted to know if they had been exposed to the deadly disease. As he waited, his thoughts wandered back to the difficult year of 1981. He had spent a lot of time in the hospital with internal bleeding (the common plight of hemophiliacs, whose blood is missing a key ingredient to cause clotting) He was given more than 50 transfusions. Through this blood supply, he had probably been exposed -- unknown to himself and medical workers -- to the AIDS virus.
When his doctor revealed his test results he learned that the report was negative. No antibodies were present, indicating that he had not been exposed to the virus. David continues to be tested voluntarily every six months, but for the present, he believes that only God could have delivered him from it. Most of his hemophilic friends are not so fortunate. About 90 per centof severe hemophiliacs have been exposed to the AIDS virus. Perhaps as many as 50 per cent of these will contract the disease.
Today relatively few hemophiliacs actually have AIDS -- comprising only about 2 percent of AIDS sufferers. Still, the epidemic has rocked this community like an earthquake. After so many years of being stigmatized as "bleeders." hemophiliacs were just beginning to conquer their troubles through advanced treatment. Now AIDS has brought them another nightmare which will haunt them in the years ahead.
At a meeting last spring for hemophiliacs and their loved ones, I noticed the fairly routine way in which subjects such as new treatments, patients’ rights and orthopedic problems were handled by the audience. Yet when the topic became AIDS, the group’s intensity heightened and the discussion became animated. Hands went up all over the auditorium. The subject of greatest interest had obviously come to the floor.
The church needs to understand this aspect of the AIDS crisis because many hemophiliacs with AIDS are seated in our pews, representing another dimension of today’s most serious medical issue, too often ignored by the media and even by those of us interested in helping AIDS victims. Several important issues need to be understood in order to approach this subject with compassion. First, we must understand hemophilia itself. Then we must understand the social problems that hemophiliacs have faced for years because of their bleeding disorder. Finally, we must see the way in which AIDS has complicated an already difficult life for these sufferers and the panic this fatal disease has brought to the hemophilic community.
A hemophiliac will not bleed to death from a single small cut, but a bump or a fall can cause painful bleeding into muscles or joints. Bleeds in the head and internal organs can also occur. Such bleeds are often the result of an accident. however minor, but they can also be spontaneous.
A hemophiliac’s blood system does everything right; however, it lacks one protein critical to the final chemical reaction. Often a hemophiliac keeps right on bleeding. He does not bleed faster or harder than other people, he just bleeds longer.
To treat a bleeding episode, the missing protein, which has been harvested from human donors, is injected intravenously. This protein is used by the hemophiliac’s system to control the clotting process. However, because the protein lasts only a few hours, and must be received from a human donor, it is impractical to give this treatment except as a response to an injury. There is no cure for hemophilia, and the person with the condition does not improve as he gets older.
The life of a hemophiliac is difficult. When he is a child, friends notice something different about him: he plays very few sports and is often absent from school. When he returns he may very well be on crutches or even in a wheelchair. As he grows up, he has trouble finding a job that will accommodate his condition. Since hemophilia is hereditary, family planning questions require sensitive genetic counseling.
In recent years, living with hemophilia had become much easier due to advances in treatment and care. A concentrated blood product, introduced in the 1960s, if given soon after accidental bleeding has begun, can eliminate much of the crippling effect the condition has traditionally inflicted on stricken joints. Wider use of physical therapy as well as contemporary psychological practices have benefited those who are recovering from severe bleeding episodes. Parents of hemophilic children have more help in raising their children than ever before, and laws protecting the handicapped have helped adult hemophiliacs on the job. Many even treat themselves intravenously at home and so have fewer hospitalizations. They have been moving more comfortably into society’s mainstream without stigma.
But AIDS has severely set back hemophiliacs dealing with their condition. Today there are over 420 reported cases of AIDS among hemophiliacs, and many more have been infected with the virus.
Since 1985 all blood concentrate used for hemophiliacs has received a special heat treatment which has been shown to kill the AIDS virus and has almost completely removed the risk of infection for those born since then or not yet exposed. So the number of hemophiliacs with AIDS should remain stable. Nevertheless, the present generation of hemophiliacs with AIDS has tough issues to face.
In the fall of 1987, Ricky Ray, aged ten, and his two younger brothers, all hemophilic children from Arcadia, Florida, who tested positive for the AIDS antibody, tried to go to school. Nearly half the student body boycotted the first day of classes, and the school received bomb threats. On the following Friday night a fire gutted the Rays’ house. The family chose to leave Arcadia and try to pick up the pieces of their lives elsewhere.
Fear of and discrimination against hemophiliacs will not disappear easily. One Los Angeles-area family whose child is hemophilic recently attempted to enroll him in a private daycare center run by a church. The parents did not tell the center when they applied that their child had this disorder, but they did inform the director prior to the first day of attendance. However, before taking their son to the center they received a call from the facility informing them that the family whose place they were taking had decided to return and that they would have to be placed on the waiting list again. The center assured the parents it was not changing its mind because the child was a hemophiliac. The family was assured that nothing was wrong with the child. Yet it has been months and the center has not called back.
Certainly a daycare center has many reasons to be fearful of enrolling a hemophilic child, and private institutions are exempt from handicap discrimination laws. Discrimination, in fact, would be difficult to prove in the above case and, indeed, may not have been present at all. Yet the situation left this family feeling pushed out by the church.
Another hemophiliac with AIDS, Ryan White from Indiana, has suffered his own nightmare. Drummed out of his school, often sick, he finds even his church uncomfortable. When his contraction of AIDS had become known, his mother went to the church to work out a plan for the Whites’ attendance. It was agreed that in order to protect Ryan’s delicate health, people with colds or illness would not sit next to him: and he would not sit next to anyone who was opposed to his attendance. (Some in the congregation were deeply involved in the actions to keep Ryan out of school.)
"After awhile.’’ said White’s mother, ‘‘it just didn’t work. We felt like a spectacle walking into church. Everyone looked at us. When Ryan coughed, they would turn around and look. On Easter Sunday everyone was warmly shaking hands. No one shook Ryan’s hand." (Though the church, along with others, did help when the Whites’ great financial needs became known, enabling them to keep their home from foreclosure.)
The church needs to respond to this suffering group with love and compassion. Being informed about the primary condition, hemophilia, is important: being sensitive to hemophiliacs’ struggle with AIDS is even more important. Churches can also help educate the public to lessen the irrational discrimination being visited on those with hemophilia.