Myths About AIDS Danger And Hemophiliacs Assailed
By JANE E. BRODY
Published: September 1, 1987
A child with hemophilia who is infected with the AIDS virus poses no exceptional risk of transmitting it to others because of minor cuts or nosebleeds, according to experts in the blood disorder.
Despite popular belief, hemophiliacs are no more likely than other people to suffer cuts themselves or to bleed profusely from superficial cuts and scrapes, hematology experts said in interviews yesterday.
The controversy in Florida over three hemophiliac schoolboys who are infected with the AIDS virus has focused new attention on hemophiliacs. Experts said yesterday that hemophiliacs suffer not only from the potential ravages of their disease and of AIDS but also from misconceptions about their tendencies to bleed and likelihood of spreading acquired immune deficiency syndrome to others. Most Problems Are Internal
Blood platelets are responsible for sealing off surface cuts, and the platelets of hemophiliacs function normally, according to Dr. Margaret Hilgartner, chief of the division of pediatric hematology and oncology at New York Hospital. The hemophiliac's problem is primarily one of internal bleeding, an inability to produce the clotting factors needed to stop bleeding into joints and other internal tissues that have been injured through trauma or surgery.
Federal experts say that blood from all AIDS virus carriers must be handled with great care, but that in many cases, infected children can attend school without posing a special risk to others. They say evidence indicates that infected blood must enter into the bloodstream of the second person, as through cuts in the skin, for viral transmission to occur.
Data also suggest that the risk of a hemophiliac's transmitting an AIDS infection even through sexual contact seems to be considerably lower than for AIDS-infected members of other high-risk groups, such as drug abusers and homosexual men, experts said.
Moreover, hemophiliacs who carry the AIDS virus seem to be developing the fatal disorder less frequently than members of other risk groups. Many scientists speculate that because of the way clotting factor had been processed, even before measures were taken in early 1985 to prevent contamination, the viral infection in many hemophiliacs may somehow be different and less severe. Screening Began in 1985
National statistics indicate that more than half of the 20,000 Americans with hemophilia have been infected by the AIDS virus, almost all because some of the concentrated clotting factor they received before March 1985, when blood screening for AIDS virus began, was contaminated.
A single dose of clotting factor can be derived from up to 1,000 different blood donors, making it much more susceptible to contamination than an ordinary blood transfusion from a single donor. Since 1985, not only has all donated blood been screened, but all clotting factor concentrates have been pasteurized to kill the AIDS virus, making these life-saving products now virtually free of an AIDS risk.
Among the approximately 10,000 Americans with severe hemophilia, the national Centers for Disease Control estimates that 70 to 90 percent now test positive for the AIDS virus. Among the remaining 10,000 with mild to moderate forms of hemophilia, the rate of infection ranges from 30 to 50 percent, a spokesman for the centers said yesterday. The different rates of infection reflect differences in the need for clotting factor. Hemophiliacs today are no more likely than others to require transfusions, which before 1985 were another possible source of AIDS virus infection, since prompt administration of clotting factor can stop severe bleeding. Few Develop Symptoms
Despite this high rate of infection, relatively few hemophiliacs have developed AIDS symptoms. As of yesterday, the C.D.C. spokesman said, 400 cases of acquired immune deficiency syndrome have been reported to occur among hemophiliacs, 370 of them in adults and 30 in children. Nationally, only about 3 percent of hemophiliacs who test positive for the virus have so far developed AIDS, which Dr. Hilgartner said appears to be a much lower rate than for other groups.
Based on studies of gay men, Federal experts estimate that 20 to 30 percent of AIDS virus carriers will develop the disease within five years of infection. Over all, more than 40,000 cases of AIDS have been reported to Federal authorities, with hemophiliacs accounting for 1 percent of the total.
Starting in 1979, Dr. Hilgartner has been following a group of more than 200 adults and children with hemophilia. Among them, 75 to 80 percent of the adults and 57 percent of the children have been infected with the AIDS virus. But only a few percent have developed AIDS, she said.
''We think that there is a difference in the behavior of AIDS virus in hemophiliacs,'' Dr. Hilgartner said. ''A high percentage of my patients have been AIDS-positive since 1980 and are still well. This is unusual in other groups that have been followed for a long time.'' Looking for Differences
Furthermore, she said, the rate of transmission of the AIDS virus to the steady sexual partners of infected hemophiliac men has been only 15 to 18 percent, considerably lower than the rate reported for other heterosexual high-risk groups, such as intravenous drug users. A few hemophiliac men have indirectly transmitted the virus to their children by infecting their wives, but the numbers have been very small, Dr. Hilgartner said.
She said she suspects there is something different about the nature of the AIDS virus acquired by hemophiliacs through clotting factor concentrates produced even before wet heat treatments were routinely used to destroy the virus.
''My hope is that hemophiliacs tend to develop functional antibodies that neutralize the virus,'' Dr. Hilgartner said. Perhaps because of the way the concentrates are prepared, she explained, hemophiliacs may have received an attenuated or altered virus that acts like a vaccine against AIDS. If this clinical suggestion can be proved, it might suggest a route to preparing an effective AIDS vaccine.
The C.D.C. spokesman said: ''We don't know yet if the virus in clotting factor has somehow been changed because no one has yet been able to isolate the virus from clotting factor. We do know, however, that it is no more dangerous for a child with hemophilia and the AIDS virus to be in school than for any other AIDS-infected child.'' Strangers Offer Help
ARCADIA, Fla., Aug. 31 (AP) -Three young brothers exposed to AIDS remained in seclusion today as strangers across the country offered help for the family left destitute by a suspicious fire that destroyed their home.
As police and fire officials continued their investigation of the Friday night fire, classes resumed without Ricky, Robert and Randy Ray at Memorial Elementary School.
The brothers enrolled at the school Aug. 24 under court order, and the succeeding week brought death threats at their home and bomb threats at their school. After the fire, the Rays gave up and said they were leaving town. A Warm Welcome in Indiana
CICERO, Ind., Aug. 31 (AP) - Ryan White's fears about his first day at a new high school vanished quickly today as students and school officials gave the young AIDS victim a warm welcome.
''It went really great - really. Everybody was real nice and friendly,'' said the 15-year-old after completing his half-day of classes at Hamilton Heights High School. ''I was terribly nervous.'
The welcome was in sharp contrast to his reception two years ago, when he was barred from Western Middle School near Kokomo by officials who feared he could spread the disease to other youngsters. A judge ruled later that he should be readmitted to school.