WHEN POPE John Paul II came to the United States he made a point of meeting and embracing a little boy named Brendan O'Rourke. Brendan O'Rourke got AIDS from a blood transfusion. The pope is not likely to face the same danger. He, like a growing number of Americans, stores his own blood. He has little faith in the safety of the public supply."
So began a CBS News with Dan Rather special report this June. In August, Brendan O'Rourke died. He was 7 years old.
As an infant Brendan received blood from 18 different donors, one of whom gave him AIDS. He did not receive blood from his parents, although they pleaded with the hospital to let them donate, and, according to court records, got into a "shouting match" with the physician who refused to honor their request.
The physician claimed it was against hospital policy to allow directed donations and that it was selfish since blood belongs to the community. No one knows what O'Rourke thought when Brendan died in his arms, but he and Mrs. O'Rourke are suing the physician, the hospital and the blood bank for their son's "wrongful death."
Over 22,000 Americans besides Brendan O'Rourke are now known to have contracted AIDS from a blood transfusion before 1985. This number does not include those who contracted secondary AIDS from other people infected with tainted blood.
For example, the pregnant wife of former "Starsky & Hutch" star Paul Michael Glaser was infected with AIDS from a contaminated transfusion during delivery and unwittingly passed it on to her daughter through breast feeding. The Glaser daughter died, while Mrs. Glaser and her next child, a boy infected in the womb, are both currently HIV positive. Hundreds, possibly thousands of spouses of America's hemophiliac population over 12,000 of whom were infected with AIDS from blood have been similarly stricken.
While these tragedies have been documented, it is less well known that since 1985, when the AIDS antibody test was first introduced, the risk of transfusion AIDS, as well as hepatitis and other blood-borne diseases, continues to be significant.
Repeated surveys have shown that high-risk individuals continue donate blood into the general supply, despite improved education. An even more serious flaw exists in the standard ELISA or AIDS-antibody test because this test does not detect the AIDS virus itself but only AIDS antibodies. Since there is a significant delay between infection with the AIDS virus and the appearance of AIDS antibodies on average six months, in some cases three years or more an unknown number of AIDS-infected units of blood are slipping through this "window period." A May 1990 study by Emory University and the Centers for Disease Control found that 18 percent of subjects who tested negative on the standard AIDS antibody test were, in fact, infected with the AIDS virus.
Despite these well-documented risks, blood-banking organizations continue to issue misleading assurances about the safety of the blood supply. Blood-banking is a multi-billion dollar industry and so-called "nonprofit" groups like the American Red Cross earn millions of dollars of tax-free income from their blood services. This past April, Gilbert Gaul of the Philadelphia Inquirer won a Pulitzer prize for his five-part series exposing the "billion-dollar business" of blood and how it is bought and sold in a "virtually unregulated market."
Gaul's expose led a congressional panel chaired by Rep. John Dingell, D-Mich., to extend its inquiry into the safety of the blood supply. In his opening statement July 13, Dingell accused the American Red Cross, which collects half of all the whole blood in the U.S., of serious violations and deficiencies: "Various Red Cross collection centers have released infected blood, mixed up records, violated AIDS testing procedures and failed to deter infected or undesirable donors."
The problem cannot be ignored. Four million people in the U.S. receive blood transfusions each year. There is a high statistical probability some experts say 95 percent that each American will require a blood transfusion or a blood product at some point in his or her life.
The American public should know that at present the blood supply is not as safe as it could and should be. AIDS is still a real risk for anyone receiving a blood transfusion. We urgently need a new AIDS virus test to replace the current, inadequate AIDS-antibody test. The potential for such a test already exists, but the government and the blood industry needs to make it more widely available and affordable.
The risk of transfusion hepatitis is higher than AIDS, claiming over 100,000 patients each year. HIV II, HTLV I and II, cytomegalovirus, Lyme disease and Chagas disease continue to pose risks to the blood supply. More care should be taken to minimize the number of potentially infected donors to which each transfusion recipient is exposed.
And more emphasis must be placed on self-storage of blood since the only blood one can be sure of is one's own. One cannot give oneself AIDS or hepatitis, nor can one have a transfusion reaction to one's own blood. Methods currently exist to store frozen blood for up to 20 years in usable condition and blood can be delivered and is, every day in a timely fashion anywhere in the country.
As Congress investigates the American blood industry, the medical consumer must be better informed of the risks of transfusion and of his options and rights as a patient. Each of us, the Brendan O'Rourkes as well as the pope, must take personal responsibility for our own blood needs and those of our families.
Joseph Feldschuh and Doron Weber are the authors of "Safe Blood: Purifying the Nation's Blood Supply in the Age of AIDS."