Bergalis went public with her condition in August, campaigning fiercely for regulations governing HIV-positive physicians and dentists that would require them to disclose their condition and thus prevent anyone else from suffering her fate. Now she is just waiting for the end. “Please get this over with,” she whispers hoarsely through her horribly blistered mouth, as her mother combs her hair. Later, after her father bathes her and carries her to bed, he says, “See you tomorrow.” And she replies, “Hopefully not.”
More than a thousand miles away, Dr. Richard Duff, a Minneapolis family practitioner, also contemplates his final days. Duff was diagnosed with AIDS more than three years ago. He believes he contracted the virus sometime between 1985, when he and his wife divorced after 18 years of marriage, and 1988, when they remarried. While he was single, Duff says, “I chased around.” Once an athletic 150-pound man who loved to play racquetball, Duff is now barely 110 - and maintains that weight only through nightly intravenous feeding. As he sits in his kitchen, slowly spooning peaches into his mouth, he seems 90, not 51. Between the diagnosis and his retirement from practice last week, Duff saw hundreds of patients who did not know he had AIDS.
Duff defends his decision to keep his condition a secret from his patients. Because he avoided invasive medical procedures, he says he “wasn’t putting anybody at risk.” In fact, he might have gone quietly into the night if not for an incredible coincidence: Philip Benson, one of Duff’s colleagues at the Palen Clinic in Minneapolis, found out last fall that he, too, has AIDS. Duff says he knows people will think the two were lovers: “That bothers me incredibly.” But, he says, there’s no connection between the two cases and he has no idea how Benson got sick. On June 14 Benson sent 328 patients a letter advising them to get AIDS tests because they had come to him for procedures that might have exposed them to the AIDS virus. In the wake of extensive publicity about Benson, Duff made his public announcement last week. r SO far, none of Benson’s or Duff’s patients has tested positive for AIDS. Duff thinks of himself as a role model for other AIDS-infected doctors. Careful physicians, he says, “aren’t risky.”
Bergalis and the Minneapolis doctors are on opposite sides of the explosive national controversy over AIDS-infected health-care workers. Just a year ago most authorities on AIDS considered it virtually impossible for an AIDS-infected physician or dentist to pass the virus on to patients. Universally accepted precautions–such as rigorous sterilization of equipment, double surgical gloves and masks - were deemed sufficient to prevent the blood contact needed for transmission. In fact, when Bergalis was first diagnosed, health officials investigating her case relentlessly looked for other explanations, such as intravenous drug use or promiscuity. When those avenues proved dead ends, they concluded that Acer had indeed given her AIDS - although health officials say the means of transmission are a mystery. Since then, four other Acer patients have been diagnosed with the same strain of AIDS.
Although the five are still the only patients known to have gotten AIDS from a physician or dentist, their cases have turned the impossible into a frightening reality. Some health officials say the public reaction in recent months has bordered on hysteria. Legislators in several states have introduced bills calling for all HIV-positive doctors to disclose their status to all their patients, a move most medical associations regard as extreme. According to a NEWSWEEK Poll, more than nine out of 10 Americans think doctors should be required to tell their patients if they have AIDS (poll). Around the country, aggrieved patients have filed lawsuits after learning that their physicians were infected - even though the patients are disease-free. Many patients say they have begun to be suspicious of any doctors they fear fall into a risk group for AIDS.
Indeed, some doctors and patients have begun to view each other as potential agents of destruction, rather than participants in the healing process. Two months ago Morey Filler, a San Francisco obstetrician, was about to perform major surgery on a 38-year-old woman when she suddenly asked him if he had been screened for AIDS. Startled, Filler told her that he and his surgical team were not in any high-risk group and took precautions in surgery. Filler says that he now dresses like a “road warrior” with high plastic boots and gloves. Los Angeles cancer surgeon Mitchell Karlan faced the opposite dilemma recently after performing surgery on a patient with a facial tumor. The procedure was a success and, four days later, Karlan was about to take out the stitches - without gloves - when the patient told Karlan that he was HIV positive and advised the surgeon to protect himself. Karlan thanked the patient, donned gloves and removed the stitches. Universal precautions required in the age of AIDS make surgery “like being on guard duty for 30 days, 24 hours a day,” says Karlan. “Every time I pick up a needle, it’s like picking up a cobra.”
Even as they try to calm these fears, health officials admit that there is some risk for both patient and doctor. According to the federal Centers for Disease Control in Atlanta, there were 6,436 reported cases of health-care workers with AIDS from the start of the AIDS epidemic in the early 1980s until this March, including 703 nonsurgeon physicians, 47 surgeons, 171 dental workers and 1,358 nurses (chart). Most experts say these figures probably represent only a small proportion of infected health-care workers since they are all fullblown reported cases of AIDS. Thousands more may have tested HIV positive. Others may be infected but symptom-free and therefore untested.
Health officials still emphasize that it is extremely unlikely that a patient will get AIDS from a physician, dentist or nurse; the much greater risk is that physicians and other health-care workers performing surgery or other invasive procedures on AIDS-infected patients will get the virus from their patients. At last week’s international conference on AIDS in Florence, Italy, Dr. Albert Lowenfels of New York Medical College calculated that the risk of transmission from an HIV-infected surgeon to a patient is about one in 48,000. “The risk closely resembles the risk of a vehicular fatality during transportation to and from the hospital,” he concluded. In contrast to the five Florida cases, there are 40 known cases of health-care workers around the country who have gotten AIDS from patients, according to the CDC, most of them from accidental needle sticks or cuts. Some officials say the actual number of infected workers may be much higher.
Given the millions of surgical procedures performed in this country since the start of the AIDS epidemic, these figures should reassure both doctors and patients. But like everything else about AIDS, there’s a big gap between knowledge and emotion. Many of Benson’s patients panicked when they received their letters from the doctor. “I was screaming,” says 30-year-old Kathy Nesby, a homemaker and mother of three. Benson delivered her daughter Nicole on Oct. 10 - after he found out he had AIDS. Although Nesby says his arms and hands were covered with oozing sores, during the next few months Benson performed three “well baby” checkups on Nicole, looking at her eyes, nose and ears. Without wearing gloves, Nesby says, he also spread the lips of Nicole’s vagina and put a tongue depressor in her mouth. Although she and Nicole have tested negative for AIDS, Nesby worries about anything that goes wrong with Nicole. “She’s had a little diaper rash now for over a month and a half,” says Nesby. “It’s sure taking a long time to clear up.”
Like other patients of Benson, Nesby was particularly disturbed by the weeping lesions on the doctor’s arms and hands. Though he claims he wore gloves when necessary, Benson performed rectal, vaginal and throat exams during months when the sores were so severe that one health-care professional who saw them compared them to third-degree burns. KARE TV of Minneapolis last week broadcast a photograph of a doctor identified as Benson delivering an infant last August; the photo appears to show sores on the doctor’s bare arm even as his gloved hands extract the baby. Nesby says that when she asked Benson about his skin condition, he told her that it was “an allergic reaction to the sun.” Another of Benson’s patients, who is suing him and wants to be identified only as “K.A.C.,” says she can’t understand why the doctor put patients at risk. “He takes an oath to save lives,” she says, “not give a death sentence.”
Neither Benson nor his lawyer would talk to NEWSWEEK about the case. But Duff, Benson’s colleague, admits that he hid the truth from patients who asked him if he was sick as he lost weight and grew weaker. He told them, “I’m dealing with a significant illness,” he says. Mostly, he was concerned about his sons - now 14, 18 and 20. “My kids are at an age where there’s a certain amount of AIDS phobia,” Duff says. “I didn’t want to cause a major crisis in my life.” According to Duff, the clinic staff knew for two years and no one quit. In fact, he says, he asked the staff to tell him if they felt he should stop practicing. “Let me know, and I’ll retire right away,” he says he told them. “Sometimes you can’t see things yourself very well.” Now he says he realizes he should have quit earlier. Because of exhaustion, he had already cut his patient load in half. “Maybe this is God’s way of saying, ‘If you’re not going to quit on your own, I’ll get you to quit’.”
But should someone have intervened sooner? Patients assume that state or federal regulatory agencies are watching over their health care. While this may be true in some parts of the medical system, doctors with AIDS are pretty much on their own. Only one state–New York–has issued enforceable rules for HIV-infected health-care workers. There are no federal regulations covering infected physicians. After months of debate, the CDC is still in the process of drafting guidelines on the issue. This week Rep. William Dannemeyer (Republican of California) is planning to introduce legislation in Congress governing infected health-care workers. Michael Osterholm, Minnesota’s state epidemiologist, is the chosen representative of the nation’s state epidemiologists to the Centers for Disease Control in its deliberations on new standards. “The lag in the development of federal guidelines is one of public health’s worst hours,” he says. “If we professionals don’t do something proactive, the state legislators and the insurance companies will do it for us.”
In Minnesota, state health officials were first notified of the Benson case eight months ago; it took that long to work its way through bureaucratic channels. Officials at the Board of Medical Examiners struggled with the case: they knew of no other situation in which a practicing physician with AIDS had been reported to his state board. Finally, after combing through records, authorities estimated that 328 patients were at greatest risk because of a combination of the timing of the procedures and the presence of the lesions. That number, revised last week to 339, includes 38 mothers and 38 babies.
The American Medical Association and the American Dental Association both recommend that HIV-positive dentists and physicians either refrain from performing invasive procedures or disclose their condition and obtain informed consent from their patients. Dr. Nancy Dickey, an AMA trustee, says professional self-regulation works best because each case presents its own set of problems. Some infected doctors in specialties where they have little direct contact with patients, such as radiology, would be able to work safely as long as they are healthy. Others, particularly surgeons, present greater risks.
Mandatory testing of all health-care workers might seem like a good solution, but some AIDS experts say it’s impractical and ineffective. There can be a six-month lag between infection and the development of antibodies that show up on a test. That could mean that a doctor who cuts himself while operating on an infected patient would have to stop practicing for at least six months until he can be tested. And a clean bill of health could be meaningless just a day after it is issued if the health-care worker becomes infected.
Where would disclosure end? Should a physician with a seizure disorder tell his patient about his condition? What about doctors who are recovering alcoholics or substance abusers? Disclosure is “incredibly murky,” says Dori Zaleznik, an epidemiologist at Beth Israel Hospital in Boston. “Do you have to tell the patient you had a fight with your wife this morning and it is affecting your judgment?”
Other physicians think the risks of testing are worth it. “The inherent right to know - for patient and doctor alike - always has to supersede confidentiality,” says Dr. Sanford Kuvin, vice chairman of the National Foundation for Infectious Diseases in Washington, D.C. “The doctor doesn’t have to put up a signboard, but there has to be informed consent if he is going to do invasive procedures. ‘First, do no harm’ is the absolute bedrock of medicine. The Kimberly Bergalises of this world are avoidable.”
Testing doctors inevitably brings up the issue of patient testing. This week the AMA will meet to debate recommendations that call for routine testing at the discretion of the doctor, accompanied by counseling and informed consent. “Doctors are afraid,” says Dr. Paul Rothman, president of Search Alliance, an AIDS-research organization in Los Angeles. “They want to know the HIV status of their patients, and doctors who work in surgery ask us about it all the time. If we get the patient’s permission, we give the information, otherwise it’s up to the surgeon to discover it on his own. In many institutions, blood is illegally and surreptitiously drawn on patients to find out their status.”
Historians say AIDS presents unique medical and social dilemmas. In past epidemics, infected doctors were never required to disclose their status to patients, says Sheila Rothman, a medical historian at the Center for the Study of Society and Medicine at Columbia University. Nor were patients expected to tell doctors that they had an infectious disease. “There was silence on both sides,” Rothman says. From 1800 to 1870, one out of every five deaths in this country was from tuberculosis. So many doctors got the disease, Rothman says, that by the 1920s it was sometimes referred to as the “occupational disease of physicians.” But even then, there was no question of not treating sick patients or of doctors who were ill refraining from practice if they were physically able to work.
Today physicians who willingly disclose their illness can pay a terrible price. Dr. Hacib Aoun’s entree into the nightmare world of AIDS came without warning, heralded only by the sharp crack of a breaking test tube and the sight of HIV-contaminated blood dripping over his cut finger. In December 1986 three years after that awful day, the Baltimore cardiologist was diagnosed with full-blown AIDS. Administrators at the hospital where he was training refused to renew his contract. He sued and settled for an undisclosed sum a year later. Aoun has not been able to find a job since. He spends his time traveling around the country lecturing on doctors and AIDS. “Death is going to catch me with my boots on,” says Aoun, 36. I’m not going to sit down and dwindle away. I have a message to pass on." He is bitter that HIV-positive doctors are treated like lepers. “The one thing that I am not doing now is the thing I love most in life and that is taking care of people, because medicine has no place for those who are HIV infected regardless of your talent.”
At this stage in the epidemic, doctors who admit they have AIDS and want to continue to help others have few choices. They can become activists, like Aoun; they can work in noninvasive fields like psychiatry or they can limit their practice to people with AIDS–considered pariahs by many doctors. In one recent study, two thirds of medical residents surveyed said they did not plan to treat people with AIDS and 74 percent of residents said they would not give lifesaving treatment to HIV-positive patients if the risk of infection to the resident were one in 100, according to Molly Cooke, an associate professor of clinical medicine at the University of California, San Francisco, who conducted the study.
Or HIV-positive doctors can continue to practice, keeping their painful secret. That is the choice that Bill (not his real name), a 41-year-old New York doctor, has made. It’s been a little more than two years since Bill tested positive for HIV. He is still healthy and is not on medication. He follows the universal precautions to the letter, including hand-washing, gloves and masks. “Do I think there’s no situation where HIV could be transmitted?” he asks. “No, there must be. But living in 1991 America puts us at risk for lots of things. You could ride on a subway that catches on fire. You can be involved in a car accident. Being alive involves risk.”
Bill says he took the AIDS test when his lover became infected. Since his lover died a year ago, he has been especially grateful for his work. “In grieving,” he says, “I’ve found that work can be a refuge. I’m glad to have it.” Bill believes that not only is he not putting patients at risk, but he is serving some who would otherwise get no health care. “I’m talking about clinic patients, patients with tuberculosis, drug abusers, patients who have no access to health care. I’m one of very few in my specialty who don’t turn away patients whose consult reads ‘HIV positive, insurance negative’.”
In the absence of federal regulations, HIV-positive doctors must make their decisions the way Bill did - one case at a time. Patients can only guess about the health of their doctors; similarly, doctors must take risks with patients they may consider suspect (box, page 54). And the few for whom the issue is no longer theoretical will try to make some sense out of their tragedy.
Like Kim Bergalis, Barbara Webb was infected by David Acer, her dentist. The 65-year-old retired teacher says she never thought much about AIDS until she saw a story in the local paper about a patient suspected of contracting AIDS from Acer. She and her husband, Bob, also an Acer patient, went in to be tested. Her husband’s test was negative; hers wasn’t. “It was just like being hit in the solar plexus by a heavyweight boxer,” says Webb. “I could hardly breathe. I thought: ‘This is impossible’.” In the months since, Webb, who is on AZT, has made a fragile peace with her disease, but she’s still angry that Acer hid his illness. Earlier this year she needed eye surgery. She told her doctor she was HIV positive and explained that she would not be insulted if he refused to operate on her; he agreed to do the operation. “I would have understood totally and gone down to the AIDS clinic,” she says. “And it wouldn’t have bothered me at all to go down. I just gave him the option. Nobody gave me the option.”
Here’s a breakdown, by profession, of all reported cases of AIDS in health-care workers since the epidemic began in the early 1980s.
PROFESSION AIDS CASES Nurses 1,358 Health aides 1,101 Technicians 941 Physicians 703 Paramedics 116 Therapists 319 Dentists and hygienists 171 Surgeons 47 Miscellaneous health 1,680 workers (social workers, administrators, etc.) TOTAL: 6,436
SOURCE: CDC DATA AS OF MARCH 31, 1991
Which of the following kinds of health-care workers should be required to tell patients if they are infected with the AIDS virus?
95% Surgeons 94% All physicians 94% Dentists 90% All health-care workers
For this NEWSWEEK Poll, The Gallup Organization interviewed a representative national sample of 618 adults by telephone on June 20, 1991. The margin of error is plus or minus 5 percentage points. Some “Don’t know” and other responses not shown. The NEWSWEEK Poll c 1991 by NEWSWEEK, Inc.
If you knew a physician, dentist or other health-care worker treating you was infected with the AIDS virus, would you:
15% Continue treatment with stringent protective measures 13% Continue treatment but exclude surgery or other invasive procedures 65% Discontinue all treatment with that person
If the following kinds of health-care workers test positive for the AIDS virus, should they be forbidden to practice?
Yes No Surgeons 63% 28% All physicians 51% 42% Dentists 60% 33% All health-care workers 49% 43%
Should patients be required to tell physicians, dentists and other health-care workers if they are infected with the AIDS virus?
97% Yes 2% No
Few health-care workers will willingly disclose their HIV status, but the chances of your contracting AIDS are slim if they follow standard procedures. Here’s what to look for:
Do the doctors and nurses wear gloves when doing invasive exams, such as dental, vaginal or rectal exams?
Do they use a new set of gloves and freshly disinfected instruments with each patient?
Do all health-care workers follow universal precautions, wearing masks, protective eyewear and gowns in addition to gloves when there’s a risk of being sprayed with blood or other body fluids?
How often does the clinic or hospital make sure its staff is actually following universal precautions?
