THE ORANGE COUNTY REGISTER

Story appeared in the ACCENT section

THE PUBLIC HEALTH: It's a question as old as leprosy or the plague. When does protecting the well supersede the rights of the ill?

MICHELLE NICOLOSI
THE ORANGE COUNTY REGISTER

Blocks north of the Civic Center, the Howard Johnson's looking out over 17th Street in Santa Ana seems an unlikely place for a debate on patients' rights vs. the public's right to protection from disease.

But when maids and desk clerks learned in March that contagious tuberculosis patients were kept there by the county, the hotel became a sudden microcosm of the centuries-old conflict pitting public health against civil liberties. Workers paused in the middle of vacuuming to point at pink dots on their arms - the mark of recent tests for TB exposure - and to retrace arguments that long have been fodder for legislative debates and doctoral theses.

Why, hotel employees asked, are contagious TB patients being kept here? Isn't my right not to be exposed to disease more important than patients' liberties?

When should the government infringe on personal liberties in the interest of public health, and to what extent? In this case, many workers at the Howard Johnson's think officials didn't go far enough, saying contagious patients should be isolated some place where they would not interact with the public. But to quarantine them would be to take a step onto a slippery slope, said Dr. Leslie J. Blackhall with the University of Southern California's Pacific Center for Health Policy and Ethics. "Are you going to put a leg monitor on them like a prisoner?" Blackhall asked. "Where does that end? Where are you going to draw the line?"

How many rights do we take away from the ill to protect the well? The questions are as old as the practice of public health; there's never been an easy answer. Even in the face of the bubonic plague, 14th-century Italian merchants fought the practice of quarantining ships, saying it infringed on their right to do business. Since then, policy-makers have passed hundreds of laws restricting personal freedom in the interest of public health. Some measures have failed - Prohibition lasted 13 years before being abolished as too great an infringement for too little benefit. Other measures - such as Cuba's quarantine of all AIDS patients to prevent the spread of the disease - serve to warn that society can go too far in efforts to protect the public, said Dr. Ron Bayer, professor with the Columbia University School of Public Health. Cuba "demonstrates how, in the name of public health, one can do extreme things," he said.

Your neighbor is one of the six Orange County people diagnosed with leprosy in 1993. His disease is mildly contagious - 5 percent of patients' spouses contract it. Do you vote with the homeowners' association to ask him to stop coming to the public pool? Do you post a warning sign on his door? OK, imagine it's your mother. What do you do now? Compromises sacrificing liberties for public health rarely earn unanimous praise: Most smokers despise new laws banning smoking in restaurants; nonsmokers praise the government for protecting them from secondhand smoke.

Many protest that laws in 28 states mandating reporting HIV-positive test results to health officials are an invasion of privacy and a harm to public health - fearful of discrimination, many people simply don't get tested. Others say the ability to warn contacts that they might be infected is worth the sacrifice. Protecting the privacy of the HIV-positive means "many people were so protected they died needlessly," said Dr. Lawrence Kleinman, formerly with Harvard Medical School and currently working in the private sector. "The failure to institute public-health measures . . . has accelerated the spread of the disease," he said.

It's 1999. Your daughter's pregnant, but because a new law mandates doctors do prenatal HIV testing, she won't go to the doctor. She fears testing positive, and that her employer and insurer might find out. You consider traveling to Europe - where wealthy women once went for abortions before they were legal here - to get necessary prenatal care for your grandchild.

A recent study shows that treating pregnant HIV-positive women gives the infant a better chance of being born disease-free. The study has led some to propose mandating prenatal testing so HIV-positive women can be treated. Critics argue mandated testing would violate a woman's rights and that some women would avoid doctors if such a law were passed.

Dr. Catherine Wilfert, Duke University professor of pediatrics, said if the majority of women decline testing, prenatal HIV testing eventually may be mandated by legislation, on the state or national level. The benefits of mandated testing could outweigh the perceived infringements, she said: It would mean fewer babies with HIV infection, lower health-care costs and lives saved, Wilfert said. Plus, mothers who test HIV-positive would have access to "I think there is very clear benefit," Wilfert said.

Bayer at Columbia said he arrives at a different conclusion. He once was criticized for helping revive a policy requiring TB patients to take medications in the presence of health workers. Now, Bayer feels mandating prenatal testing is too much encroachment for too little return. Still another expert - Dr. George Rutherford, associate dean of the University of California, Berkeley's school of public health and past top state health officer - said mandated testing isn't unheard of: It's already done for syphilis and other conditions, he said. "This isn't breaking new ground," he said. "This is an extension of current practice."

Each time the liberties vs. protection argument comes up, policy-makers mull "what is the balance between individual rights and the protection of the public health," said Rutherford at UC Berkeley. Each time they ask: "How many people does this affect? Is it a potentially fatal situation? Is it preventable? All of those things are considered," said Wilfert at Duke. There are no hard and fast rules, no constants, no easy answers, said Dr. Hugh Evans, professor of pediatrics at New Jersey Medical School. The issue "is a moving target," he said. The answers change with the times and are molded by political influences, economics, emotions and fears, experts said.

Sometimes, decisions don't come down from the top. The Centers for Disease Control and Prevention leaves many issues up to the discretion of local health departments. For example, the CDC publishes no guideline on when it's safe to place a contagious TB patient in a hotel: It's up to each health department to decide when patients no longer pose a risk to the public. Some departments, such as Long Beach and Los Angeles, put patients on medications for two weeks before placing them in hotels. Others, such as Orange County, evaluate each patient for risks of contagion and place them in the hotel when "the risk of transmission to others is minimal," said Penny Weismuller, county manager of disease control.

There are two alternatives to putting patients in a hotel, but both are unacceptable, Weismuller said. Not giving them a place to live means some might go to homeless shelters, where crowded conditions and shared circulation increase the risk of transmission. And quarantine would be an unwarranted deprivation of liberty, she said. "This is not a society that without due process deprives liberty," she said. Bayer at Columbia agrees that "if we deprive people of their liberty, we do so only after we've attempted to find a way of achieving public-health ends with less restrictive measures." Blackhall at USC agreed, saying the rise of patient-rights movements over the past 40 years have led to the situation that "we (now) put more emphasis on individual liberty than on public health."

Some worry that this emphasis on liberties can compromise public health: Protecting the privacy of HIV-infected patients means their infected sexual contacts may suffer; protecting the mother means the baby might get sick. Blackhall predicts today's emphasis may shift if deadly strains of TB spread out of control or if society is struck by more deadly diseases - such as the exotic Ebola virus - as experts predict. "AIDS may well be just the first of the modern, large-scale epidemics of infectious disease," writes former CDC scientist Jonathan Mann in his introduction to "The Coming Plague." The more deadly the danger posed by emerging diseases, "the more people will be willing to sacrifice civil liberties," Blackhall said.

Blackhall believes the re-emergence of deadly TB, hantavirus, AIDS and other infectious diseases already have sent the pendulum slowly swinging away from the emphasis on liberties and toward greater protection. Rutherford, at UC Berkeley, agrees that "it swings back and forth," but said even in a world awash in dangers and diseases, it will never swing too far afield for long. "I don't think you can continue to legislate protections out to the nth degree," Rutherford said. "In an American society, there is always a heavy counterbalance about individual freedom."

That counterbalance will ensure the United States will never be as it was 80 years ago, when TB patients - who today are trusted to stay in their homes - were confined to sanitariums for months and sometimes years. "Clearly, we're at a different point than we were at the turn of the last century," said Bayer at Columbia. Then "there was a treatise in constitutional law that said . . . that in the face of public-health threat all rights must give way. It's good no one could write a sentence like that today."