'My life has been taken away' Bergalis endorses testing health care workers for AIDS


WASHINGTON -- She sat in her wheelchair, still and expressionless, as if oblivious to the massive curtain of reporters and photographers that shrouded her as she was wheeled into the packed congressional hearing room.

But solemn and stone-faced as she was, 23-year-old Kimberly Bergalis was not oblivious. When it was time for her to speak yesterday morning, the young woman -- her nearly skeletal body sapped by acquired immune deficiency syndrome -- told members of Congress what she'd traveled 19 hours to say.

"AIDS is a terrible disease we must take seriously," she said from her wheelchair, reading the short statement swiftly, like one long run-on sentence, in a shaky and colorless monotone.

"I did nothing wrong, yet I've been made to suffer like this. My life has been taken away. Please enact legislation so no other patients or health care providers will have to go through the hell that I have. Thank you."

Ms. Bergalis, infected with the human immunodeficiency virus at her dentist's office in 1987, had traveled by train from her home in Fort Pierce, Fla., to urge a House subcommittee to support a proposed bill, named for her, that would mandate AIDS testing for health care workers and patients.

It was her "dying wish" to do that, said George Bergalis, father of the woman whose infection is the first apparent incident of a patient contracting the HIV virus during a medical procedure.

Ms. Bergalis, wearing a pastel floral pants suit and ivory slippers, her limbs shrunken and stiff, sat between her parents while delivering her message -- which she did in less than a half-minute.

Soon after, she was wheeled out of the hearing room while her father stayed to testify -- and while the highly charged debate over mandatory AIDS testing raged on.

"My wife said this morning on national television that Kimberly is America's shame. Kimberly is your shame, also," Mr. Bergalis told members of the subcommittee on health and the environment, angered that no law required Dr. David Acer, his daughter's AIDS-infected dentist who died of the disease in 1990, to disclose his condition to patients.

"I am a father who's profoundly enraged by the impending loss of his daughter, a loss which was preventable," Mr. Bergalis said. "You cannot do anything to restore Kimberly's health, nor can you relieve my family of the pain and suffering we have endured. But you can do something to ensure that you will not be held accountable for other Kimberly Bergalises."

The proposed bill, introduced by Representative William E. Dannemeyer, R-Calif., would require mandatory AIDS testing for all patients and health care workers who perform invasive procedures and prohibit doctors who are found to be HIV-positive from performing such procedures without patient consent.

Barbara Webb, a 65-year-old woman from Palm City, Fla., who was also infected by Dr. Acer and favors mandatory testing, and others infected with the HIV virus also testified -- the latter group both for and against the controversial legislation.

Leading scientific and medical organizations such as the American Medical Association and the American Dental Association, as well as mainstream gay rights and AIDS activist groups, have all opposed the Bergalis bill and mandatory testing. They believe such testing would be costly and useless since a number of people who carry the disease still test negative and since the risk of doctor-to-patient transmission is negligible. They believe resources could be better spent on research and treatment.

The risk of contracting AIDS from an infected physician "is so remote that it may never be measured," former Surgeon General C. Everett Koop told the subcommittee last week.

Ms. Bergalis and four other patients believed to have been infected while under Dr. Acer's care are the only known cases in which the fatal disease has been transmitted during a medical procedure. It is not known how the virus was transmitted.

Yesterday, Dr. Hacib Aoun of Baltimore, a former Johns Hopkins physician who contracted the deadly virus from a patient's blood in 1983 and opposes mandatory testing, said the highly-publicized Florida cases were an "aberrancy."

"Instead of yielding to fears and misconceptions," he said, ". . . we should devote our energies to improving the understanding of how this illness is . . . transmitted."

He said the voluntary disclosure of his HIV status to prospective employers "had no benefit to anyone, but resulted in great adversity to meand my family. Whenever I told my prospective employers up front about my illness, my capacities, my skills and credentials were no longer the factors determining my employment. Instead, my illness."

During many simple surgical procedures, he said, "the chances of surgeons cutting themselves and bleeding inside the patient is minimal to almost none."

But Dr. Ed Rozar, a Wisconsin cardiac surgeon who stopped performing surgery after finding out he'd been infected with AIDS, said,in supporting the bill, "If the risk was one in a trillion, and there was something I could do to prevent it, I would do it."

Barbara Fassbinder, a former nurse from Monona, Iowa, and one of the first health care workers known to have been infected by a patient, said she favors education and the strict use of "universal precautions" -- guidelines set forth by the federal Centers for Disease Control under which all patients are treated as if they have an infectious disease -- over mandatory testing.

David Barr, an assistant director of the Gay Men's Health Crisis center in New York, said that while he opposes the Bergalis bill and has been pitted against her, "Kimberly and I are not that different."

"I appreciate and share your anger, Kimberly," Mr. Barr said.

"Like you, I feel that I do not deserve this fate. Although we may have acquired this virus in different ways, I never asked for this, and neither did the over 115,000 Americans who have already died. We are all innocent victims here."

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