San Francisco Chronicle - Friday, December 22, 1989
Charles Petit, Chronicle Science Writer

While the 13 laboratories studied apparently did the tests correctly in a technical sense, the manner they interpreted and described the results "highlight(s) major problems associated with HIV testing," the authors say.

The report is by a team led by Dr. Abram S. Benenson at the San Diego State University Graduate School of Public Health, in collaboration with Dr. Mark Ascher at the California Department of Health Services laboratory center in Berkeley, and doctors at the federal Centers for Disease Control in Atlanta.

Their report is in today's Journal of the American Medical Association.

Some of the laboratories, which were not identified, got ambiguous results but did not perform follow-up tests to obtain a clear answer. At times they labeled their findings "final results" even though standard guidelines call for more testing to be sure.

DOUBLETALK

More than 30 million tests for the HIV virus that causes AIDS are performed per year, and often the results go to physicians with little specialized training in AIDS care. Excessive "doubletalk" in the way the labs report results back to doctors may "obfuscate the meaning of those results" and slow down timely treatment of AIDS or HIV infection, said an accompanying editorial by Drs. D. Peter Drotman and Ronald O. Valdiserri of the Centers for Disease Control.

"I know a woman who was told three or four years ago she was positive, and finally came back to her doctor to ask why she hadn't gotten sick. It turned out with more tests she never was infected," Ascher said.

He said he knew of a healthy baby whose parents spent two fearful years certain that the child was infected. Many immigrants have been refused entry on the basis of preliminary tests that were wrongly labeled as final results.

Often, terms used are far out of date. One laboratory used the term HTLV-III to describe the HIV virus, a label that has not been accepted for several years. Three laboratories said a positive result implies mere "exposure" to the virus, while nearly all authorities say confirmed positive antibody tests for the human immunodeficiency virus (HIV) is evidence of actual infection.

"You tell a patient he has just been exposed to the virus, he'll think great, I got away with something, that's good news," Benenson said. "It's not. It means infection."

SIGNIFICANT VARIATIONS

Another laboratory, which got what its workers believed to be four separate samples from four separate places but were actually all from the same person infected by the virus, reported two of the samples to be positive and two to be "indeterminate."

"These results suggest significant day-to-day variation" in performing the Western blot strip reactivity test, the most common initial test employed by laboratory's to detect antibodies to the virus.

Had the laboratory used the latest standards for interpreting test results, rather than the 1985-era method it employed, "all those tests would have been interpreted, correctly, as positive," Benenson said.

The problems are worse in private labs, Ascher said. "The public health labs, military and state labs, all work together," to develop simple and effective guidelines, Ascher said. "But the outside guys were left to themselves."

Often, results were buried in legal language apparently meant to protect the laboratory from liability if the confidentiality of the patient were violated. Sometimes, "you can't even tell if the result is positive or negative," he said. "The physician needs to know what the tests mean, not all this gibberish." said Benenson. "What do you tell the patient?," Benenson asked. "Well, Joe, maybe you got it, maybe you don't? What does that do psychologically?"

Because laboratories are licensed state-by-state, blanket federal regulations to enforce uniform terminology and forms may not be possible, Benenson said. But, he said, laboratory managers seem genuinely interested in doing better. Voluntary adoption of uniform language for reporting test results may be possible, he believes.

Always watch for outdated information. This article first appeared in 1989. This material is designed to support, not replace, the relationship that exists between you and your doctor.

AEGiS presents published material, reprinted with permission and neither endorses nor opposes any material. All information contained on this website, including information relating to health conditions, products, and treatments, is for informational purposes only. It is often presented in summary or aggregate form. It is not meant to be a substitute for the advice provided by your own physician or other medical professionals. Always discuss treatment options with a doctor who specializes in treating HIV.

Copyright ©1980, 1989. AEGiS. All materials appearing on AEGiS are protected by copyright as a collective work or compilation under U.S. copyright and other laws and are the property of AEGiS, or the party credited as the provider of the content. .