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Had a blood transfusion? Planning a baby? Then have an anonymous, free AIDS test.

When Amy Sloan of Lafayette, Indiana, entered the hospital in 1982, the last thing on her mind was AIDS. The disease was not widely discussed then, and Amy had other concerns--namely, a painful case of ulcerative colitis. During treatment, she received three units of blood that hadn't been screened for the AIDS virus--no test had yet become available to detect AIDS antibodies.

Three years later, in the spring of 1985, Amy experienced chest pains and breathing difficulty. A doctor familiar with AIDS symptoms was suspicious; tests confirmed his worst fear: the 24-year-old woman, not in any of the high-risk groups, had contracted AIDS from a tainted transfusion. The news was even more shattering because Amy had learned just two days earlier that she was pregnant. AIDS-antibody positive women are urged to become pregnant, because pregnancy puts a burden on the body's immune system that can precipitate full-blown AIDS. Then there was the worrisome question of whether her baby would also be infected with AIDS. Statistics indicate that children born of women carrying the AIDS virus have as much as a 50 percent chance of contracting the disease.

Amy's son beat the odds. With a representative from the Centers for Disease Control on hand during delivery, Amy gave birth to a healthy baby, who has since tested negative for the AIDS virus several times. Amy's husband, Steve, has also tested negative for the virus.

Amy Sloan died in January of this year, but only after a courageous battle against the illness. Instead of slipping off quietly to face the disease alone, she took it upon herself to raise public awareness of AIDS. She gave dozens of interviews, appeared on the "20/20" TV show, testified before state legislators, and spoke at nearly 100 group and public meetings.

For her family, Amy's death only reinforced the need for more action. "I think there should be much more education and testing," her brother, George Brook, told the Post recently. "This isn't a thing to be played with. It seems like we're just burying our heads in the sand."

Amy's estate is suing the Central Indiana Regional Blood Center even though it wasn't possible for the center to have tested the blood at the time of the tragedy. The Centers for Disease Control, in fact, points out that it wouldn't have been legal to test blood for AIDS then because there was no FDA-approved test at that time.

The attorneys for Amy Sloan's estate are asking for a jury trial. Dr. Margaret Waid, the associate medical director of the Central Indiana Regional Blood Center, says"If any major funds are awarded to anybody for an AIDS case, the blood banks will be forced to close down throughout the nation. There are a couple of instances where a financial settlement was made out of court," she said, "but it was a modest amount, not a million dollars." The Sloan case is the only one so far, against the Indiana blood bank. Dr. Waid believes that legally the claimants "don't have a leg to stand on. This is why their lawyer wants a jury trial," she says. "He thinks that the jury will give a sympathy award even though they don't have valid grounds.

'Here's a little child conceived while a woman was AIDS positive, and the child deserves something toward his education.' " Dr. Waid indicated such a decision would be disastrous, not just for central Indiana but for the country.

Amy's story is tragic, and there are hundreds of similar heart rending deaths like hers throughout the country.

Nevertheless, spokesmen for the scientific community and for the blood-bank industry feel that it is most unfortunate that the blood bank is being sued by her estate.

One FDA official, however, who asked not to be named, suggested that the lawyer for Amy's estate might make a case that blood banks should have used greater care in screening out high-risk donors after the AIDS epidemic began. And this is the subject of our present concern.

Sad as Amy's case is, the blood banks were without tests. But now that tests are available, are some high or moderately high-risk persons using the blood banks as an expedient and free method of learning their AIDS status? Are the blood banks diligent enough in teaching would-be donors about the small but dangerous "window" of three to six months, during which time the infectious agents may be in the donors' blood although no antibodies have yet appeared? (The blood from these persons may escape into the blood supply, no matter how carefully the blood banks test.) At this writing there are eight documented cases of AIDS from blood donated after the 1985 antibody tests became available. Assuredly, more will follow.

Consider the first one: In November 1985, a 31 -year-old blood donor at a Colorado blood-collection center was found to be positive for AIDS. His donated blood was disposed of. Unfortunately, it was discovered he had already donated blood twice that year-in April and August.

Recipients of the April blood were tested for AIDS antibodies and found negative, but the two recipients of blood from the August donation tested positive for AIDS. One recipient was a 60-year-old man who had received the AIDS-bearing blood during surgery in August. The man had been married for 30 years without having had any extramarital sexual contact and would have been considered risk-free for AIDS.

When interviewed later, the donor of the AIDS-positive blood admitted knowing he was in a high-risk category when donating in August. He told interviewers he had had sexual relations with a male partner on May 15, 1985, his first homosexual encounter, he claimed, since 1974. Presumably, he contracted the AIDS virus during the May encounter, but it failed to show up on an AIDS antibody test when he donated blood more than two months later. His sexual partner, a 22-year-old man who had been homosexually active since the age of 18, also tested positive for AIDS.

Dr. Charles Schable of the Centers for Disease Control told us researchers find that most of the cases where AIDS blood has been donated in the "window" period before antibodies were formed have turned out to be from high-risk donors.

An FDA spokesman agreed. "Part of the problem is that minorities may not understand the printed literature, partly because there is an illiteracy problem in the country, partly because there may be a language barrier, and partly because those who can read don't read. When you interview people who are positive and who donated and you ask them questions about risk, you find that 85 percent of the time they have risk factors. The problem is when you ask them why they didn't self-exclude, the answer you get is, 'I didn't understand. I didn't know that meant me.' So it is clear that part of the problem is not getting the message through. On the other hand, part of the problem may be the people who come in and just want to be tested, so they lie or deny. One part of the puzzle is improving the way we talk to donors. A second part of the puzzle is, 'Can the test be made better?' The answer to that is, 'Sort of.' Yes, a test can always be made better, but the tests are not going to be made astoundingly better because they are already so good."

Because it is estimated that 12,000 people may have been infected with the AIDS virus from blood transfusions received before 1985, The Saturday Evening Post Society is using its resources to help identify these individuals in its membership as soon as possible. In time, if we find more people developing AIDS from post-1985 blood, we win wonder why we haven't tested everyone who has had a blood transfusion, including those post-1985 recipients.

We would also like to offer the test to any member who is contemplating becoming pregnant and wishes to be tested. The order form is on page 61. Members are asked to use this form only-photocopies will not be accepted. The ELISA (Enzyme Linked Immunosorbent Assay) test will be given at no cost and in the unlikely event it is positive, it will be repeated. If it is again positive, a Western Blot test will be given.

Because many of our members live in communities where an anonymous AIDS test is not readily available, we will mail test packets that enable readers to have blood drawn at any hospital or commercial medical laboratory, without having to consult family physicians if readers are embarrassed. A lab will charge a few dollars for drawing blood and centrifuging off the serum before mailing it to us.

Before launching an effort to help our members, the Post Society wanted to meet the public in order to learn more about how people feel about voluntary, free AIDS testing with counseling. We started using our AIDS MOBILE to give tests at the Dick Lugar Health Fair in Indianapolis. In 1985 we did spirometry screening on smokers at this fair in order to ferret out those smokers especially vulnerable to emphysema. In 1986 our Mammobile performed free breast X-rays to heighten the public's awareness of the great need for more of this screening.

It was quite logical to test the people at the 1987 Dick Lugar Health Fair who wished to have voluntary, free, anonymous AIDS testing with counseling.

We augmented the counseling process with an hour-long videotape about AIDS. My staff and I had gone to the CDC in Atlanta to obtain an interview with Dr. James Curran, the director of the AIDS program at the CDC. His advice for AIDS-positive individuals is constructive.

There have been some interesting surprises from the public during the testing. Most interestingly, we discovered how eager the public is to be tested-how little people seem to care about anonymity when it is offered and suggested. The attitude mostly is that they want to know and are more concerned about not passing AIDS on than they are in making sure that their own names are not used. Our phlebotomists and volunteers always pointed out that individuals can use a deceased relative's name instead of their own.

The drawing of 10cc of blood for the test requires only 1-1/2 minutes to administer, but we've found that visitors to our mobile AIDS testing unit want to stay around for small talk after the sample of blood has been drawn.

"A few tell jokes, others ask questions, but almost everyone wants information," explains Andy Burnett, one of two phlebotomists manning the lab on wheels. "They've heard the basic facts; now they want specifics. They share personal experiences, like 'I had a blood transfusion three years ago and I was wondering if. . . .' "

Frank Esparza, the other member of the phlebotomy team, adds, "It seems to be an all-or-nothing situation. If one person agrees to the procedure, pretty soon all of his friends, family, and co-workers are lined up waiting their turns."

The stigma once attached to AIDS seems to have diminished, but the fear and danger remain. The numbers are known, and they are frightening: an estimated 1.5 million Americans are now infected with the AIDS virus, and, according to U.S. Surgeon General C. Everett Koop, nearly 179,000 victims will die of the disease by 1991. Stunned by these statistics and sobered by the predictions, people realize the disease is not the burden solely of homosexuals and drug users. AIDS has been identified in the ranks of such vulnerable persons (like Amy Sloan) who received blood transfusions prior to 1985, when bloodscreening tests were initiated; sexual partners of transfusion patients; newborn babies of AIDS victims, and a small but worrisome group of patients currently receiving tested but tainted blood donated by AIDS carriers who contracted the virus so recently it isn't yet evident in the lab.

Our phlebotomist Andy Burnett explains: "Last week we were doing AIDS tests from the Mammobile, and when women finished their mammograms, we would tell them about a free test for AIDS available if they felt they might have had an opportunity to have been exposed-i.e., blood transfusion, spouse's blood transfusion, unfaithful spouse, etc.

"It frightened me to hear them say, 'Yes, I want to be tested. But the blood bank is going to be here tomorrow, and I'll get tested by donating blood then.' Some viewed it as safe as killing two birds with one stone-- find out their AIDS status and give blood at the same time.

"After this happened about ten times, I realized that these people believe that the antibody test is a good enough screen to protect the blood supply. It's frightening, and it is obvious that these people just didn't understand that the AIDS antibody may not be obvious in the lab for three to six months after exposure. So such people who have lingering suspicions can pass the screening test, give blood, and unknowingly contaminate the supply."

When this occurs, painstaking and time-consuming efforts are required to trace the bad blood from recipient to donor. The task becomes increasingly complicated when a patient testing positive for AIDS has received multiple transfusions from multiple donors. Such was the case in Indiana when a critically ill patient was given transfusions of blood from about 175 donors. Because this blood was all given after mandatory screening tests were in effect, all units were believed to have been safe. However, infectious blood had apparently passed through the "window" during the antibody screening test at the blood bank. The "window" refers to the period when the donor is infectious but his antibodies have not yet developed.

The patient recovered from the original illness but later tested positive for the AIDS virus. The diagnosis touched off an intensive search-and-identify campaign by the regional blood center. Each of the 175 donors had to be located, alerted to the situation, and urged to undergo an immediate AIDS test.

Donors to blood banks are not anonymous. Their names must be kept in the event that AIDS antibodies are discovered in a recipient of their blood. In this tragic event in Indiana, all but 10 of the 175 donors for this patient have been notified and are in the process of being retested. At this writing, the Central Indiana Regional Blood Center believes it could take six weeks to retest all the contacted donors to determine if the virus came from an infected donor. If this individual gave blood subsequently, it would, of course, be retrieved, or if it were transfused, the recipient would need to be tested for AIDS"This is a difficult situation," admits Jeannine Murphy, a spokeswoman for the Central Indiana Blood Center.

Later, Dr. Margaret Waid, the associate medical director of the blood bank, told us: "We have found that about ten people have moved out of town since they donated, and the post office doesn't have forwarding addresses. So we'll probably never find out if there is such a thing as a putative donor, because we don't know if the recipient got itfrom the blood or some other source. She was not tested prior to getting transfusions. But because these people have moved out of town and left no forwarding address, we really don't have a way to chase them down.

We'll probably never know. We do this all the time with hepatitis investigations, and we never find a putative donor for hepatitis investigations, or rarely do."

When people get infected blood, the scientists always want proof that the person wasn't already AIDS positive before the questionable blood was received. The Society advises our members to ask their doctors for a test before any surgery that may require a blood transfusion. This inexpensive baseline test showing negative would then prevent conjecture by blood banks that perhaps it wasn't the transfusion but a prior high-risk life style that had caused the AIDS.

As devastating as the disease is, the majority of people who test positive for it appear perfectly healthy, and by following certain guidelines, they can hope to remain that way for a long time, even indefinitely. Because the active AIDS virus overpowers white blood cells that normally defend against virus and bacteria, a person who develops AIDS becomes defenseless against infections such as pneumonia and influenza. Current research indicates victims should avoid immunosuppressants-that is, anything that will curb the body's ability to fight infections. Included on the list of drugs to avoid are steroids, and such mild immunosuppressants as estrogen, some antibiotics, and aspirin. General advice is offered by Dr. James Curran of the Centers for Disease Control: "Avoiding smoking, excessive alcohol intake, and harmful drugs are logical recommendations," Curran says"It's not likely that these really are related to AIDS, but they're good health recommendations. Someone who has pneumonia, for example, is less likely to survive that pneumonia if he's been a chronic smoker. So, if I were infected with the AIDS virus, I would avoid smoking for my general health, knowing I had a chronic illness and knowing I needed to be in the best possible shape to fight it."

Pregnancy is rigorously discouraged for women who have tested positive for AIDS antibodies. This advice is stressed not only because there is a high risk of infecting the baby, but also because it is believed pregnancy suppresses the mother's immune system and renders her more vulnerable to the AIDS virus.

Live-virus vaccinations, such as the ones for measles, mumps, and rubella, also are dangerous for people carrying the AIDS virus. Dr. Frederick Ruben of the University of Pittsburgh has done studies, however, that indicate inactive vaccines (injections of viruses that have been killed) may be safe for AIDS victims and may be effective against such diseases as pneumonia and influenza, two illnesses that often cause serious and even fatal problems for AIDS patients.

People who test AIDS antibody positive must assume they are infectious and should take strict precautions against spreading the virus to others. They should never donate blood, tissue, or organs, and they should never share needles, syringes, razors, or toothbrushes with anyone, and should not get tattoos or have their ears pierced. They should inform their dentists and other health-care providers that they are infected with AIDS so that those health-care providers can take precautions to protect themselves and their other patients.

Persons with only the slightest likelihood of having contracted the virus are urged to undergo the simple AIDS test. What do they have to lose other than a small sample of blood?

"I'd want to know if I were infected with the virus," says Dr. Robert C. Gallo, chief of the laboratory of tumor-cell biology at the National Cancer Institute. "I'd want a chance of not passing it to my wife; I'd want to be near a good doctor; and I'd want an experimental anti-AIDS drug."

Because I agree with Dr. Gallo's logic, I underwent the simple AIDS detection test not because I question my husband's fidelity--I would wager my life on my husband's monogamy. But I handled the thin patients in Ethiopia without gloves. If I am antibody positive, would I want to give it to the person I love most? Never! Like Dr. Gallo, I would not want to chance passing it to my spouse. In addition, I would want him living and well so he could take care of me should I develop AIDS.

The importance of voluntary testing of symptom-free heterosexuals is made obvious by several recent programs that have yielded surprising data. In the only study of marriage-license applicants so far (undertaken in Oakland, California), 8 of every 1,000 subjects were found to be carrying the AIDS virus, according to Dr. Robert Redfield of the Walter Reed Army Medical Center. Military findings are even more startling. The armed forces, which have tested some 2.5 million military personnel and recruits, have discovered AIDS-causing viruses in roughly 1.5 of every 1,000 tested. Dr. Redfield says a surprising 40 percent of those who tested positive were married.

Just as a positive test carries with it certain guidelines and responsibilities, so does a negative test.

"The surest way to provide a healthy blood supply is for healthy donors to come forward and donate-those people who know they are not at risk," urges Terry Gautier of the American Red Cross.

With AIDS research ongoing, new information-accurate and otherwise -is being released daily. The date may change, but the prescription for good health does not: to our members we say, have a safe and simple AIDS test if there is any possible way in which you may have become infected. If the results happen to be positive, become familiar with the dos and don'ts of coping with the virus. If the results are negative-which they most likely will be-plan to do your part in fighting AIDS by becoming a regular blood donor.

The bottom line: it's patriotic to volunteer for an AIDS test. It's patriotic to donate blood for a cleaner blood supply for all.
COPYRIGHT 1987 Saturday Evening Post Society
No portion of this article can be reproduced without the express written permission from the copyright holder.
Copyright 1987 Gale, Cengage Learning. All rights reserved.

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Title Annotation:special AIDS report
Author:SerVaas, Cory
Publication:Saturday Evening Post
Date:Sep 1, 1987
Previous Article:Stand up to AIDS.
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