Coercion Isn’t Answer : How to Test for AIDS--A Dilemma

Neither education nor coercion will stop AIDS, public health officials say. They are uncertain what will prevail. But still, they must act.

Kristine Gebbie, director of the Oregon state health division, was talking about that one recent morning.

“I don’t think I can go about my business just wringing my hands and saying: ‘There are no right answers. Oh, my gosh, this is so awful. There is no way to go.’ Meanwhile, the world is going right over you. You take the best shot at where you can go.”

Their best shot right now, the health officers believe, is greatly expanded, widespread voluntary testing and counseling, offered in a variety of facilities that serve high-risk populations. Those would include venereal disease clinics, drug abuse clinics, community and migrant health centers and family planning clinics.

Testing Will Come

AIDS experts at the national Centers for Disease Control believe such testing will come in time, as federal legislation and public attitude create diminished discrimination and increased confidentiality.

“The issue never has been quite as simple as voluntary versus mandatory,” said Dr. Walter Dowdle, the Centers for Disease Control’s AIDS director. “The CDC says that testing should be pushed. That’s different from voluntary, which implies something passive. It should be pushed for high risk, but not forced. . . . Gradually, the test will become more and more accepted. Clearly this is going to happen.”

Expanding voluntary testing, however, will only intensify the present debate over a host of tough problems.

Will the testing be done anonymously or by name? Will positive results be reported to state authorities? Will that be done by name or by demographic data only? Will all partners of those infected then be notified? Will they be told who infected them? Will recalcitrant patients, unwilling to warn others or modify their behavior, be quarantined?

It is here that the public health officers now find themselves most frequently enmeshed in agonizing dilemmas. To them, there seem to be few unequivocal answers.

Two of the more highly regarded state health officers in the country are Gebbie and Thomas M. Vernon, executive director of Colorado’s Department of Health. They respect and admire each other and share many of the same values and instincts. But at a crucial fork in the road, they chose separate paths in the fight against AIDS.

The differences in their decisions and their experiences reflect the complicated nature of the issues now facing health officials.

Vernon has insisted on applying traditional, classic public health policy to AIDS, drawing parallels between that disease and others he has fought, including tuberculosis and syphilis.

“If we can’t use these methods, we are doing substantially less than we know how to do,” he said. “There are tried and true methodologies which have worked in the control of communicable disease before. To the extent they are applicable, they should be utilized.”

On the other hand, Gebbie, concluding that AIDS cannot be fit into previous disease models, has modified the traditional approach.

“It became clear that if we sort of forced the usual public health pattern onto this disease,” she said, “it would have the perverse effect of looking elegant and accomplishing little. . . . Since my goal is to stop AIDS, not to prove that classic public health behavior works, I’m prepared to be flexible.”

Traditional Measures

Traditional public health measures involve testing by name, reporting to the state health agency all positive cases, tracing and notifying others who might have been exposed and, when necessary, quarantining the most dangerously contagious cases.

Those are the tools used against syphilis, against tuberculosis, against smallpox. Those are the tools public health officers instinctively reach for.

When they thought to do so with AIDS, however, they found parts of their community screaming at them. No, AIDS does not fit that model, the gay and civil rights activists were saying. You have no cure to offer this time. The social stigma and discrimination are far greater threats with this disease. Using names and reporting and contact tracing will drive away those you most need to reach.

Gebbie and Vernon considered.

Despite the outcry, both felt there were some parallels between AIDS and these other diseases.

Something to Be Hidden

There was a time when syphilis lacked a cure, after all. There was a time when syphilis presented to a respected family a horrible social stigma. A father dying of brain damage from syphilis was something to be hidden, denied.

And yet, Gebbie and Vernon also knew there were times past when the tools of their profession were abused. Early public health officers fighting smallpox, for example, were given to strapping on a gun, galloping off to various stagecoach lines and hauling off travelers with pockmarks.

There was a fine line to walk here, they came to see.

How best to fight AIDS? Pursue the disease relentlessly, with the classic ways of epidemiology, or do what is needed to reach the greatest number of people carrying the virus?

Vernon trained at the Centers for Disease Control in Atlanta as an epidemiology intelligence service officer, battling such diseases as cholera, shigella and malaria.

‘Captivated by Epidemiology’

“I am profoundly influenced by that background,” he said. “I am captivated by epidemiology.”

There never was much question of how he would decide the AIDS questions.

Only if we identify and track cases by name, Vernon felt, could health authorities accurately follow the epidemiology of an infection. With names, they could track down individuals who do not return to clinics after testing positive. They could trace the infected person’s partners. They could eliminate duplications in counts.

To this day, he reasoned, when we have traced a syphilis contact, someone likely to be positive, we can call 49 other states and get an instantaneous response to find that individual and get him into treatment. We can do that for AIDS contacts in something like only eight or 10 states.

“It is antithetical to the practice of medicine; it is antithetical to the practice of public health, not to use names,” Vernon said. “We practice health by dealing with people who live in communities. I mean, that’s what public health disease control is all about.”

Wanted Routine Tests

The truth was, Vernon wanted much more than names. He wanted the AIDS test to be routinely used in all sorts of medical-care settings, wherever you might get a regular blood test. He’d inform the patient, but not ask special permission.

“Mainstreaming” the test is how Vernon saw it.

He recognized the need for a trade-off on this, though. The patients would have to give informed consent, considering the stigma and discrimination connected to AIDS.

That was to Vernon “unmainstreaming” the test to an extent he did not, on balance, think was healthy. But he figured it was necessary. Without informed consent, he’d drive away from the medical-care system those most in need of help.

Vernon met and listened with gay and civil rights groups, but they never could change his mind.

Colorado Tests by Name

Colorado became the first state to insist upon testing by name and reporting all positive cases by name. The state health department adopted those policies in late 1985. This spring, the Legislature passed a statute making them state law.

Colorado’s policy, however, contains a big loophole, one that often escapes attention when Vernon and his state are described as pushing the toughest AIDS policies in the nation.

Colorado requires names at testing sites, but does not require proof of identity. Anyone can give a phony name. There are those who claim they have been tested under Vernon’s name.

This Vernon had to allow. Another trade-off, he said, to avoid driving people away. It is a trade-off that reveals how few options the various health officers actually have in a pragmatic world.

Better Than Anonymity

His way is better than out-and-out anonymity, Vernon contends. In a system that allows pseudonyms, there is at least the chance you might get the real telephone number or address. You are changing the environment of the interaction.

All the same, Vernon conceded: “It’s an option for anonymity. It is clearly that.”

Even with such a compromise, Vernon has been bitterly vilified by gay and civil rights groups who believe the health commissioner is creating an Orwellian nightmare for them.

In the columns of the local gay newspaper, Vernon checks off and underlines the references to his name. “A cesspool of leadership” gets a big star. “A murderer” gets another.

This reaction is telling about the politics of AIDS. Vernon, whose credentials and sincerity are endorsed by all sorts of health professionals, would not normally get cast as a right-winger.

He is by upbringing and background a liberal Democrat, schooled at home in the traditions of Eleanor Roosevelt and Adlai E. Stevenson, active in the citizens lobby Common Cause on both the state and national levels.

Teen Tested Positive

When one local health department moved to quarantine a teen-age boy who tested positive, Vernon wrote a letter and spoke out in protest. When a state education commissioner urged that students with AIDS be barred from school, Vernon again raised his voice.

The fact was, Vernon explained, he felt it important to impose the measures he did precisely to hold off even more stringent ones. If he did not demonstrate leadership and do what he could, he feared he would be opening the doors to irrational, repressive actions proposed by a frightened public and a reactionary Legislature.

But his policies ended up encouraging a conservative, tough-on-AIDS California congressman to hail Vernon as a model for the nation. Rep. William E. Dannemeyer (R-Fullerton) was making him a poster boy while the civil rights crowd was casting him as a villain.

“What I’ve found is that my beliefs about how we control an epidemic, and how I fulfill my responsibilities as a public health commissioner, appear to be in conflict with a group of people that I have considered my allies,” Vernon said. “I am perceived as being an infringer by a group of people with whom I am temperamentally allied.”

Cowed by Pressures

Only seven other states have followed Vernon’s approach. Given the Colorado experience, there are those who suggest most other health officers have been cowed by political pressures. But, in truth, the pressures come from all directions, the left and the right, no matter what course is chosen.

Most health officials feel handcuffed as much by pragmatic considerations as political ones. They would like to use names in testing and reporting, for example, but firmly believe that would alienate and drive away the high-risk groups they most want to reach. They simply do not think Vernon’s way will work.

Such is Gebbie’s position in Oregon.

There are few who regard Gebbie as vulnerable to pressure. Most regard her as strong-minded, if not headstrong. Her critics would call her overbearing to a fault. She was the first woman and first non-physician to serve as president of the Assn. of State and Territorial Health Officials. She is now chairman of that group’s AIDS task force.

Gebbie, as it happens, at first took a stand similar to Vernon’s.

“Some members of the gay community have urged that HTLV-III (AIDS’s scientific name) testing be offered anonymously because of fears that confidentiality may be breached,” she wrote in a memo to local health departments in December, 1985. “I do not believe this is in the best interest of public health. The division will not offer anonymous antibody testing. . . .”

Then leaders from the gay community came to her office. They spoke calmly but their message was clear. Gebbie would lose many of those she most wants to attract.

A Different Background

Gebbie comes from a background a good deal different from Vernon’s epidemiology. Her bachelor’s and master’s degrees are in nursing, her working career in the delivery of health care. Before moving to Oregon in 1978, she was an assistant director and associate professor at the St. Louis University Hospitals.

Vernon’s whole training is in tracking a disease, she would say. Hers is in throwing a health carenet around as many people as possible.

As she listened to the gay group, it occurred to Gebbie that she did not understand the extent to which discrimination and rejection had haunted these people’s lives, well before AIDS arrived. Now, with the virus, they were being shunned by family, employers, landlords, insurance companies and even some hospitals.

Gebbie listened to one middle-age man from southern Oregon, ill with AIDS, softly explain that three different doctors had refused to treat him. She heard about a man down in Roseburg, injured in a car accident, rushed to a hospital emergency ward. There he warned the staff he was AIDS antibody positive, just as he was supposed to do. It took only hours for the news to spread. The next day, his employer fired him.

Simply because she works for the government, Gebbie realized, they do not trust her.

Eyes ‘Full of Fear’

“It took a long time for me to come to grips with the look in the eyes of gay men who were coming in,” she said. “It was full of fear. It became evident that the whole gay rights movement was something I would have to grapple with.”

The only way I’ll go to anonymous testing, she finally told them, is if we design a research study that proves what you are telling me. What you are saying is out of your gut. You don’t have any more data than I do.

At trial sites offering the option of anonymous testing, people were asked whether they would have come anyway if the option had not been available.

After eight months, Gebbie felt the answer was clear. A group with a fairly high rate of infection was coming in only because of the option.

Oregon now offers anonymous testing. Antibody positive results are not reported to the state in any form. Later this year, gradually, Gebbie hopes to start getting positive cases reported, with demographic data but no names.

Warning of Partners

Local Oregon health departments urge individuals who test positive to warn their partners. They also do some contact tracing on their own. Gebbie supports this--her national task force sparked a firestorm of protest when it simply suggested that states consider contact tracing--but her views are more qualified than Vernon’s.

Given limited resources and lack of a cure, she is not sure a widespread tracing program is worth the expense and manpower. Tracing has much more value for unsuspecting low-risk groups, she and others believe, than it does for high-risk groups already concerned about AIDS.

“The fact is, at least within some groups, tracing is close to irrelevant,” she said. “If we have 5,000 very sexually active gay men in Portland with multiple contacts, then my AIDS message is exactly the same to every one of those 5,000. I don’t need to find person A who is positive and trace person B,C,D to tell them they are all in the path of the virus.”

Testing and tracing and reporting are complex issues full of trade-offs, Gebbie has decided.

Enclosing Epidemic

“The issue for us is, how do I get a boundary around the epidemic?” she said. “If I get a boundary around one infected person and call out that person’s name, and in doing so all the other infected people run where I will never even begin to get them inside my fence, then I haven’t done society any good by naming the one name.”

A number of health officials believe such quandaries as that one would be neutralized if only the confidentiality of test results could be guaranteed in the future. The threat of discrimination colors everything.

As it happens, Gebbie and Vernon both believe they can protect test results.

Syphilis has been primarily a disease of gay and bisexual men for 15 years in Colorado, Vernon said. Officials there do contact tracing with that and there’s never been a breach.

‘Been Done for Years’

“Gay men come off the wall when this idea of contact tracing is done,” Gebbie said. “Like nobody has ever had a public health record where you can find out that I am gay. Well, I don’t want to tell you this out loud, but we have. It’s been done for years. We have a couple of investigators whose specialty is tracing syphilis though the gay community. I have drawers full of stuff like that and nobody has ever asked to see it.”

But as the conversations unfold, it becomes apparent that health officials cannot promise blanket confidentiality in AIDS cases.

Ethical and Legal Duty

That promise conflicts with the medical profession’s growing sense of an ethical and legal duty to warn third parties when they face risk from a person infected with AIDS.

In traditional contact tracing with diseases where there is a cure, the initial “index case” can remain anonymous. With AIDS, though, health officers are not really protecting a third party unless they identify who exposed them to the virus. Otherwise, the contact might continue.

Health care providers are agonizing over this conflict.

They find themselves in the position of watching silently as unaware individuals come into contact with people the health officials know are carrying the AIDS virus.

When an Oregon sex offender molested a child, Gebbie was furious to learn other government authorities had known for some time he was AIDS antibody positive, but had warned no one.

Patients Carry Virus

Susan Goodman, a nurse epidemiologist and AIDS counselor for the Josephine County Health Department in Grants Pass, Ore., has watched as doctors and nurses wheel patients into surgery, patients she knows are carrying the AIDS virus. Although her colleagues might be making contact with the patient’s blood, Goodman cannot warn them.

A Kaiser Permanente physician in Portland, Dr. Robert Lawrence, has treated a bisexual AIDS patient who wouldn’t tell his wife, as well as a male prostitute with AIDS who wouldn’t cease his sexual activity. When he sat on an Oregon AIDS policy committee headed by Gebbie, those experiences led Lawrence to write a minority dissenting report arguing for reporting all cases by name.

“Yes, there are times we would breach confidentiality,” Vernon said. “The duty to warn overcomes other ethics. And because we require reporting by name, I am able to carry out this duty to warn more effectively than can anyone else.”

Gebbie does not so much disagree as see limits. There is a duty to warn, she feels, one that falls first to the infected person. If that person doesn’t want to do it, the health department is willing to step in. But what if the person just digs in his or her heels and says, “I’m not going to tell anybody anything about my contacts”?

‘I Don’t Trust You’

“There really isn’t a whole lot you can do,” Gebbie said. “That’s true with syphilis, that’s true with TB or anything else. If the person just flatly says, ‘I don’t trust you, I won’t talk with you,’ what you’ve got to do is sort of fall back and figure out ways to build enough of a relationship that you can get them to start talking.”

They could, on the other hand, quarantine all the recalcitrants, for the rest of their lives.

Vernon and Gebbie both have pushed new laws through their legislatures that spell out precisely when and how they can impose quarantines. Those laws in fact limited the broader and vaguer powers the health officers had under older statutes, but they left no doubt that quarantine is an option in certain precise cases.

Bonds of Confidentiality

That is a power, though, that neither officer is eager to use often.

Health officials by nature hesitate to betray those who come to them. The deepest traditions of the medical profession involve bonds of confidentiality with their patients.

Concerns about a threat to society are countered by a desire to use the least repressive measures possible. People need to be protected, Gebbie points out, but people should also be informed and careful enough to protect themselves.

‘A Terrible Dilemma’

Besides--perhaps most important--who would come to be tested in the first place if they knew they might be quarantined?

“This is a terrible dilemma and I’m not comfortable with it,” Gebbie said. “I can’t buy either side of the quarantine argument.”

So the health professionals proceed gingerly, without guideposts, on a battlefield not of their own choosing.

“Am I an accessory if I don’t warn a third party?” said Lawrence, the Kaiser physician. “I don’t know where the hell I stand. In essence, I am muddling along, trying to make ethical decisions, hoping not to make a mistake. There was a time when I even tried to argue for mandatory testing--but testing just wouldn’t make a difference. Every doctor is struggling like this. I’m not special or unusual.”

The two health officers in Oregon and Colorado finally have no way to decide which of them is right. They cannot quantify their results.

Gebbie can offer data from her test project that suggests she has pulled in a number who otherwise would not get tested. But she acknowledges she may have been duped by those answering the questionnaires.

Some Driven Away

Vernon offers data to show he has been able to locate a number who tested positive and did not return for their results. But he says he’d be a fool to deny that he has driven some away from Colorado testing sites.

In the end, both acknowledge they don’t know which of their paths promises to be most effective.

Said Gebbie: “What if my decision to do anonymous testing is wrong? Or what if Vernon is wrong to require names? How do we know? If you encounter someone who knows the answers, please let me know.”

Said Vernon: “Is Colorado now more effectively controlling the epidemic than somebody else who does not use names and reporting? I cannot answer that question. I’m not sure I ever will be able to do that.”

Researcher Nina Green contributed to this story.