AIDS and doctors: managing a communication crisis.

AIDS AND DOCTORS: managing a communication crisis

Thousands of scientists from around the world gathered in Florence, Italy, June 17-21, for the 1991 International Conference on AIDS. They made gloomy predictions that by 1995, 15 million people will be infected with HIV worldwide, compared with an estimated eight to 10 million people now.

The reporter's call came Wednesday, June 19, to Ben Skonieczny, public affairs director at the Kaiser Permanente Medical Center in Sacramento, Calif., 100 miles northeast of San Francisco.

KCRA-TV, Channel 3, the NBC-affiliate in Sacramento, had been tipped that a Permanente physician, Dr. Lazlo Nemeth, had died from AIDS in April. A concerned former patient of the doctor had agreed to be interviewed on air, said the reporter. Would Kaiser comment?

Skonieczny alerted his supervisors in public affairs at Kaiser Permanente's Northern California regional offices in Oakland. By phone, they developed key media messages:

* The multitude of steps Kaiser Permanente takes to protect patients/staff from HIV transmission, including adherence to Universal Precautions, a strict set of guidelines requiring all health provides who come in contact with patients' body fluids to wear gowns, gloves, masks and goggles;

* The low risk of transmission as identified by the national Centers for Disease Control;

* The availability of testing/ counseling for those concerned;

* The importance of patient and employee confidentiality.

Then, Skonieczny arranged for Channel 3 to interview his chief of infectious diseases, who acknowledged Nemeth had died of HIV-related illness and that his cause of death was a matter of public record. Also, there was no risk of virus transmission: Nationwide there were no documented cases of HIV transmission from physician to patients; as a further safeguard, the family practitioner performed few invasive procedures and had stopped even those after testing HIV positive.

A somewhat sensationalized story topped the evening news and included an interview with a former Kaiser employee who said she'd served as Nemeth's medical assistant and saw him perform many invasive procedures.

On June 20, the Sacramento Bee ran a scathing letter to Florida health officials from Kimberly Bergalis, the 23-year-old who contracted HIV from her dentist's improperly sterilized dental tools. "AIDS has slowly destroyed me," she wrote. "Unless a cure is found, I will be another one of your statistics soon. Who do I blame? Do I blame myself? I sure don't. I never used IV drugs, never slept with anyone and never had a blood transfusion. I blame Dr. Acer and every single one of you bastards."

Tuesday morning the Kaiser story appeared in the Bee opposite the Bergalis letter. Concerned this could fuel further controversy, Skonieczny, public affairs management and Sacramento administrators planned an afternoon press conference. Three physician spokespersons were selected - an assistant physician-in-chief, an HIV expert, and a colleague and personal friend of Nemeth's.

Following a briefing to review key messages, the doctors met with reporters, who immediately questioned whether Kaiser had notified Nemeth's patients. No, replied the physicians, because there was no significant risk of transmission. Had there been significant risk, Kaiser would have notified patients immediately, as it did in the mid-1980s after thousands of members received blood transfusions through a Bay Area blood bank prior to routine blood screening for HIV. But, said the physicians, concerned patients could seek HIV testing and counseling, and they could call Kaiser Permanente's "AIDS hotline" for information about HIV.

For a second night, the story led the evening news, this time on all stations in the Sacramento and Stockton media markets. Overall, says Skonieczny, "the coverage was objective and presented the situation as being under control. Everyone felt really good, believing the story might have run its course."

On June 21, Dr. Jonathan Mann, former chief of the World Health Organization's global AIDS program, announced at the closing session of the International AIDS conference in Florence, Italy, that the AIDS pandemic is growing in momentum and HIV "will reach most, if not all, human communities."

Late Friday afternoon, Skonieczny reached across his desk to answer the phone. "We've received a report that a physician at Kaiser Permanente's medical offices in Stockton died of AIDS. Is this true?" asked a different reporter from Channel 3.

Skonieczny checked, confirming the report was correct. Dr. Earl Miller had died of HIV-related illness a month before Nemeth. Unlike Nemeth, however, Miller exercised his legal right not to report his condition to Kaiser Permanente administrators. He continued unrestricted practice as an obstetrician/gynecologist, who in the normal course of duty would have performed some invasive procedures involving women and newborn children. Skonieczny also learned that Miller, before coming to Stockton, had practiced in the San Francisco Bay Area at Kaiser's medical center in Hayward.

A story about Miller appeared in the Stockton Record on Saturday. The article quoted Skonieczny, who said Kaiser learned Miller had died of AIDS only after the cause of death was listed on his death certificate, that there is no evidence the AIDS virus can be transmitted by any other means except unprotected sex or the transmittal of blood or body fluids, and that blood shed in a hospital delivery room comes from patients, not doctors. The story, which listed AIDS hotlines in Sacramento and Stockton, also said Kaiser would not be notifying Miller's patients, but would provide counseling and free HIV testing for any patients who desired it.

On June 24, delegates to the American Medical Association's (AMA) annual convention in Chicago debated whether physicians and patients should be routinely tested for HIV. Outside the doors of the AMA meeting, national media recorded police arresting 25 angry demonstrators. U.S. Vice President Dan Quayle, who attended the convention as a guest speaker, told reporters, "I believe that everybody would like to know whether their doctor is infected with HIV."

Arriving at work Monday morning, Sharon Wamble, director of public affairs for the Kaiser Permanente Medical Center in Hayward, checked her electronic mail (e-mail) for news updating all public affairs activities in Northern California. There she found a detailed report of the events in Sacramento and Stockton. "Most opinions were that the issue was contained within the area," she recalls.

Then about midday the Associated Press contacted her colleague Skonieczny in Sacramento. The story went out on the AP wire that afternoon.

Wamble was clearing her desk to leave for the day when a reporter from the Hayward Daily Review called. He had picked the Miller story off the wire and wanted to know if Kaiser had known the doctor had AIDS, how long Miller had practiced in Hayward, how many patients did he have, and why hadn't Kaiser notified them of Miller's death? The reporter gave Wamble, who had not seen the wire, 50 story minutes to respond.

Immediately, Wamble called her supervisors in Oakland to get the contingencies from Sacramento. Then she called her medical center administrative designee, who was unaware of the events occurring in the area. "I brought her up to speed and told her I wasn't sure if this would be a big deal or not. But just in case, we'd better set up an information line," says Wamble. Within 40 minutes of the reporter's call, the Hayward infoline, which linked callers with HIV counselors, was ready to go.

Wamble called back the Daily Review. "I sensed the story was going to be sensationalized, so I tried to put it in perspective for the reporter, who normally covered the police beat, not science and health," she says. "I asked him to use this as an opportunity to educate his readers about HIV, not to stir up hysteria. Then we went over Universal Precautions and the risks of transmission according to the CDC."

Wamble also detailed Kaiser Permanente's policy for handling self-identified HIV-infected health care workers. "Health care providers who tell us they've tested HIV positive have their practices reviewed by their department chief, the medical center physician-in-chief and the chief of infectious disease," Wamble explains. "If there's the slightest possibility of risk from invasive procedures, we change their duties if not remove them totally from patient contact. We're such a large organization, we can do this and guarantee the provider will suffer no economic loss."

Newsweek arrived at the homes of some three million subscribers on June 25. The cover story, "Doctors with AIDS," asked readers, "Should patients and doctors have the right to know each other's HIV status?" 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.

On Tuesday, a fairly balanced story about Miller ran in the morning edition of the Hayward Daily Review. By 7 a.m., medical center phones were lit up with callers wanting more information. At 8:30, Wamble was beeped out of a meeting by Beverly Hayon, Kaiser's manager of media relations for Northern California, who said KPIX-TV, Channel 5, the CBS affiliate in San Francisco, and KGO-TV, Channel 7, the ABC-affiliate, wanted interviews with a Hayward physician and one of the infoline counselors.

Fortunately, Wamble could call on Sharon Levine, M.D., a former assistant physician-in-chief and newly appointed associate executive director for physician support for The Permanente Medical Group, Inc., who had had media training, as had one of the infoline counselors.

Hayon joined Wamble at Hayward in the afternoon so each could accompany a TV crew as they interviewed the spokespersons, who had been briefed about key messages. Levine's comments proved the sound bites of choice, especially when she told reporters Miller had been her own obstetrician/gynecologist, and she did not plan to be tested.

"The real beauty of the whole day was everyone knew their roles and each others'," says Wamble. "I didn't have to worry about establishing relationships in the middle of a crisis. Beverly came from Oakland to coach Dr. Levine, who'd be addressing physician policies, and to be a spokesperson herself. My associate at the medical center knew her job was to refer all media calls to regional headquarters, since the story now involved all Northern California. Regional public affairs sent detailed contingencies to the region's 15 other medical center representatives so we could all speak with one voice to the media and in our communications with employees. Hospital security in Hayward protected the privacy of patients in areas where TV crews were taping. One remaining concern was for grieving employees, who hadn't known until that morning their friend and former colleague Miller had died."

June 26. In Washington, D.C., Congressman William Dannemeyer, Republican, Calif., introduced a bill named after Kimberly Bergalis, requiring regular AIDS testing of health-care workers and some patients. At the same time in Chicago, the AMA announced its toughest stand yet on AIDS testing, urging the nation's doctors to get tested periodically for the virus and permitting physicians to test patients who give oral consent.

On Wednesday, calls came into the Hayward infoline at the rate of one call per minute. Few callers expressed panic. Most wanted information. Many just wanted to express grief about their former physician's untimely death.

Meanwhile, CBS Network News and the Cable News Network (CNN) picked up the Miller story. At Kaiser Permanente's Northern California headquarters, public affairs management met with key Health Plan and Medical Group administrators to discuss the events and make policy decisions. Then, they sent an e-mail message to Kaiser Permanente public affairs managers in 11 other regions outlining the communication plan and detailing the story's progress.

In the Bay Area, the San Francisco Chronicle and Channel 5 called to confirm two more Permanente physicians had died from HIV-related illnesses: a surgeon at Kaiser's Vallejo Medical Center, who had voluntarily stopped practicing the day he tested HIV positive, and an internist at the San Francisco Medical Center, who died in 1988 but stopped practicing in 1986.

"In the latter case, the physician hadn't even told his children about the cause of his illness, which they learned on TV," says Hayon. "Such revelations may be justified if patients are at risk, but they weren't."

Bob Hughes, assistant director of public affairs for Northern California, says, "Initially, our plan was to cooperate with the media so we could inform members and the public about HIV and the minimal risks of transmission. But when that openness backfired and the media turned the whole affair into a Kaiser-only story, we had to draw the line. No longer would we help reporters by dredging up dated information that all along was a matter of public record, such as with the physician from San Francisco."

Instead, public affairs would continue to emphasize basic key messages about how Kaiser Permanente protects its patients, the near-zero risks of transmission, and the availability of testing and counseling. "People needed to realize this was not simply a Kaiser story. It's a societal issue that we're naturally involved with because of our tremendous numbers, including more than 3,000 Permanente physicians," explains Susan Pieper, public affairs manager for Kaiser's Northern California medical centers.

Hughes agrees. "If it was going to be a witch hunt, it should at least be a fair witch hunt. Where were the reporters asking the rest of the HMOs, hospitals, medical groups, and medical societies about how many HIV-infected doctors they have?"

On June 27, two Oakland, Calif., dentists ran a small ad in the San Francisco Chronicle and the Examiner proclaiming they had been tested for HIV and were virus-free.

Thursday morning, Kaiser Permanente public affairs representatives throughout Northern California were advised by public affairs regional management to refer all media inquiries regarding names of doctors believed to have died of AIDS to Hayon, Hughes or Pieper.

Meanwhile, a Bay Area hospital received media inquiries about a surgeon who had died of AIDS in 1983. The hospital's PR department called Kaiser Permanente public affairs for advice in handling the situation.

A reporter from the Chronicle called for information for an article questioning the media hype on HIV-infected doctors when obituaries on health care providers who have died of AIDS have been public for years.

June 28, 29. Bay Area media began downplaying the risk of provider-to-patient HIV transmission and broadening the debate into a societal issue. Channel 5 aired a live confrontation between a physician who advocates mandatory testing and the attorney for the American Association of Physicians for Human Rights. The San Francisco Chronicle reported that undue hysteria about providers with AIDS was diverting health care resources from areas of greater need.

On June 30, 11 days after a reporter called Kaiser Permanente's Sacramento Medical Center to confirm the death of a Permanente physician from AIDS, the two dentists who advertised they were virus-free told the San Francisco Examiner they had received more than 100 phone calls, but all to berate them. Not a single appointment was requested.

Susan Keast Jessie is a freelance writer in the San Francisco/Oakland area.