A Transfusion of Fear

By Amy Wilentz

The elderly patient had no known risk for AIDS when he received a blood transfusion in 1982. The procedure was routine, similar to one undergone each year by up to 4 million Americans -- victims of auto accidents, those recovering from operations, cancer patients and others. But this transfusion contained the seeds of tragedy: unknown to anyone at the time, the blood was infected with HIV, the virus that causes AIDS (acquired immunodeficiency syndrome). The next year the patient developed an AIDS-related form of pneumonia, and he died in 1984. His wife tested positive for the AIDS antibodies, and was later diagnosed as having a type of cancer associated with AIDS. She too has died.

Citing rare cases like this one, the Centers for Disease Control in Atlanta last week expanded the number of Americans who should consider whether to be tested for exposure to a disease that is still largely confined to male homosexuals, bisexuals and intravenous drug users. Although only 683 of the nation's current total of 32,825 AIDS cases resulted from tainted blood transfusions, the CDC estimates that as many as 12,000 of the 34 million who received blood before it was screened may have been infected. The CDC and the American Red Cross recommended that physicians consider offering AIDS tests to some of the 9 million individuals still living who received transfusions between 1978 and April 1985, when health officials began to screen all donated blood for infection.

Though the recommendation was only the latest in a series of testing advisories to groups at risk of AIDS infection, the sweeping nature of the draft proposal caused considerable alarm as well as widespread criticism of the CDC. The outcry may have been exacerbated by the way in which the advisory became public. It was leaked early last week and was only released by the CDC, in more cautious language, several days later. Immediately following the leak, telephone lines at blood centers and American Red Cross chapters were flooded with calls from panicky transfusion recipients, and top public health officials from New York State, New York City and New Jersey issued a statement questioning the wisdom of the CDC proposal.

The study on which the recommendation was based -- a review of AIDS infections among leukemia patients at New York City's highly respected Memorial Sloan-Kettering Cancer Center -- did "not indicate the need for any new public health advisory," the group said. For years transfusion recipients have been considered at only a slightly higher risk for AIDS than the population at large, but the danger is substantially greater among hemophiliacs and some leukemia patients who regularly require massive transfusions. Says Dr. Donald Armstrong, one of the authors of the Sloan- Kettering study: "We just documented something which had been assumed by everybody -- the larger the number of transfusions, the greater the risk."

Puzzled physicians worry that the CDC advisory will inspire fear in a large number of people who are unlikely to have had any exposure to AIDS. Health officials estimate that from 1978 to April 1985 only one in every 2,500 units of blood was contaminated. The current risk of AIDS contamination is one in every 250,000 units of donated blood. Says New York City Health Commissioner Stephen Joseph: "To give the impression that everybody who has ever received a transfusion should get themselves tested is both alarmist and has no basis in probability." But CDC officials note that recipients are the only risk group that has not so far been specifically advised to seek testing.

AIDS experts, doctors and public health officials agree that four factors are involved in determining whether a transfusion recipient should consider getting tested.

-- When were the transfusions administered? The risk period was from 1978 until April 1985, but the earlier the blood was received, the lower the infection risk.

-- How much blood did the patient receive? The leukemia patients in the Sloan- Kettering study received an average of 164 transfusions over a period of six months to two years. Patients who do not have a blood-related health problem receive an average of three pints of blood. Even among those massively transfused leukemia patients, only 16 out of the 204 subsequently tested positive for exposure to AIDS.

-- Where did the blood come from? Before screening began, the risk of exposure to AIDS was considerably higher in such cities as New York, San Francisco, Los Angeles, Houston, Miami and Washington than in regions relatively untouched by the disease. "A physician in North Dakota might say, 'There is no risk here,' " says Dr. Harold Jaffe of the CDC. "But if there were a pregnant woman in New York who received a lot of blood in 1984, then a physician might recommend that she be tested."

-- Is the transfusion recipient sexually active? Says Sloan-Kettering's Donald Armstrong: "If I were 70 years old, not planning to have a family and had had just one transfusion, I would not run to get my blood tested. But if I were 25 and had had 20 transfusions, and was planning to start a family, I would definitely go. One has to weigh the risks."

The furor created by the CDC's testing advisory was compounded when the federal Department of Health and Human Services also chose last week to release its long-delayed AIDS-education plan. The report, made public only after congressional prodding, was delayed for nearly two months by a sharp split in the Administration. Health authorities believe that the best AIDS prevention consists of candid information and safe-sex techniques like condom use, while conservative officials hold that chastity and marital sanctity are the only moral methods for preventing its spread.

For months HHS officials have been quarreling over the AIDS policy with Education Secretary William Bennett and other right-wing activists who argued that a dose of "appropriate fear" might be necessary. "Irresponsible sexual behavior" is the "main cause of the spread of AIDS," reads one memo from the Department of Education to HHS. The memo goes on to say that an earlier and more explicit HHS draft on AIDS education "resembles a dog-care manual. Not guidance for people." In a statement of principle accompanying the plan's release last week, Bennett wrote, "Young people must be told that the best way to avoid AIDS is to refrain from sexual activity until as adults they are ready to establish a mutually faithful monogamous relationship." Responded Democratic Congressman Henry Waxman of California: "The Administration is confusing the handling of a public health epidemic with their social agenda."

While the final plan stresses abstinence and sexual fidelity, health experts agree that many of the specifics that HHS outlined are useful. The policy focuses on the school system but defers to state and local school boards "along with families, community and parent groups" on the content of AIDS education. The plan calls for a national media campaign as well as aggressive efforts to reach high-risk groups, and encourages the creation of special programs for black and Hispanic youth, who are considered to be particularly at risk. In fiscal 1987 the Government will spend $79.5 million on AIDS education, more than double last year's outlay. But as last week's controversial and hesitant recommendations reveal, the Federal Government has yet to fashion a coherent response to an increasingly divisive public health crisis.

With reporting by B. Russell Leavitt/Atlanta and Dick Thompson/Washington