Tough Public-Health Choices Ahead : Education Called Remedy to AIDS Panic

So that explained it. He was dying. Those purple splotches on his legs were a kind of cancer. His body would be unable to fend it off. He had AIDS.

The odd thing was that Donald Fanus felt fine. He continued to work at the main library in Fort Lauderdale, Fla., where he was a mail clerk. He still went to the gym. He saw friends. They helped him make paper cutouts in the shape of his legs. He kept track of the splotches with a red felt-tipped pen.

He liked the people at the library, and with some he shared his terrible news. Soon his secret, like his cancer, was out of control. His bosses found out, then the top brass with the county. “Terminate the employee,” was what the general counsel advised in a memo.

On Dec. 31, 1984, Fanus--tall, muscular and dying--was fired. “I feel like a leper,” he lamented to friends. He had no job, no income, no prospects. Four months later he attempted suicide. In September, the AIDS finally succeeded where the sleeping pills had failed.

The last months of Donald Fanus, 49, were made all the worse because he had been fired. The best medical evidence was that AIDS could not be spread through casual contact, but officials in Broward County, Fla., decided that the best evidence was not the safest bet. They cast him out.

Conflicts of Public Duty

In these fearful days, with an epidemic loose across the land, state legislatures, local governments, school boards and health officials have agonized over many similar decisions about the killer AIDS. America’s No. 1 public health menace places policy-makers in a quandary in which compassion conflicts with the obligations of caution.

Some of the questions they face involve precious civil liberties: Do governments need to know the names of those with the deadly virus? Should those people be isolated? Fired from their jobs? Or, much to the contrary, should steps be taken to protect their rights?

Other questions go straight to the gut: Should Johnny have to go to school with a kid who has AIDS? Can society force the sexually active to turn celibate? Can lawmakers believe what all those scientists are saying? Or can AIDS be spread from the hands of a cafeteria worker or the rim of a communion cup?

Across the nation, the answers have been as varied as the firing of Donald Fanus in Florida and a ban on discrimination against AIDS patients in Los Angeles. They sometimes reflect public hysteria as much as concern for public health.

“Until now we’ve seen a lot of shooting the shotgun in the air and hoping a bird will fall,” said Dr. James Mason, director of the federal Centers for Disease Control (CDC). “People are still deciding what needs to be done.”

Regulations and proposals have indeed been scattershot.

Official Responses Vary

In New York, health officers have been given the power to close public bathhouses where gay men frequently have sexual contact. In California, state money has been budgeted for AIDS research. In Colorado, laboratories have been required to report the name of anyone who tests positive for the AIDS virus.

This recent action in Colorado is among the most controversial. State officials say it will permit them to trace the spread of the virus more easily--and, just as they do with venereal disease cases, to alert the sex partners of disease carriers. This, they promise, can be done confidentially.

But there is anxiety that a health bureaucracy cannot keep such information a state secret--and that a positive test for the AIDS virus, like a scarlet letter, will result in thousands of people being cast out, much as Donald Fanus was.

More than 15,000 Americans have been diagnosed as having acquired immune deficiency syndrome, a fatal disease that impairs the body’s ability to fight infection.

But another 1.5 million people--one in every 150 Americans--already carry the virus, according to CDC estimates. About 5% to 10% of them will get AIDS within the next five years. All can transmit the disease now.

‘A Class of Pariahs’

“We risk the creation of a class of pariahs, people so stigmatized by their association with the disease that they can’t keep a job or a home or buy insurance,” said Thomas B. Stoddard, a lawyer with the American Civil Liberties Union.

With just that in mind, Wisconsin legislators last summer barred the results of AIDS tests from being revealed to anyone except the person tested. A few weeks ago, however, the lawmakers reconsidered, and now the information can be disclosed to others such as morticians, hospital officials and insurance companies.

“Basically, the insurance industry felt it was taking it on the chin,” said Nancy Kaufman, deputy director of the state’s Bureau of Community Health and Prevention. “They thought people who were AIDS-antibody positive would go out and buy large life insurance policies.”

But if test results cannot be kept secret, many persons likely to carry the AIDS virus will avoid taking the test for it.

“We live in a nation where in 23 of the 50 states, gay sexuality is a felony,” said Dr. Alvin Novick, professor of biology at Yale University and president of a group concerned with health care for gay men and lesbians.

“This is not a climate where people can trust their government with test results.”

Inevitably, though, it is government at all levels that must untie these difficult knots--solve the competing interests of business and benevolence, public health and personal liberty, the nightmare of Orwell and the freedoms of a democracy.

Rafts of Legislation

Already, AIDS legislation of all sorts has been introduced in more than 20 states, and, as legislatures reconvene in the next few months, a raft of other bills are expected.

In Florida, a legislator has proposed that all teachers be tested for the AIDS virus--and that the infected ones be fired. In New York, legislators have asked that anyone with AIDS be barred from getting a marriage license.

In Minnesota, a Republican candidate for governor has proposed mandatory AIDS screening of hospital patients, food handlers and anyone arrested for prostitution or intravenous drug use. In Texas, the state health commissioner has asked for power to quarantine AIDS patients who are deliberately spreading the disease.

In San Antonio, the city health director has sent letters to AIDS patients, warning them of felony charges--and 10 years in prison--if they engage in sex. In Cincinnati, a city councilman has demanded that homosexuals be purged from the health department lest they be involved in making AIDS decisions.

In Palm Beach County, Fla., a judge rigged a prostitute who has AIDS to an electronic surveillance device, trying to make sure she stayed under house arrest. In Indianapolis, a judge tossed out a theft charge against a man with AIDS and ordered police to put him on a bus to his hometown.

In Cleveland, rules at City Jail require that an AIDS victim not only be isolated in a cell, but that all surrounding cells be kept empty. In Valhalla, N.Y., an inmate with AIDS terrorized people by spitting at them. Anxious county officials let the man plead guilty to a misdemeanor without a court appearance, even though he was arrested on felony charges involving stolen property.

‘Illusion’ of Action

“People are hooked on trying to create the illusion that they’re doing something, and usually, all they’re doing is panicking,” observed Tim Sweeney, executive director of LAMBDA Legal Defense and Education Fund, a homosexual-rights group.

But others say that timely prudence is being mistaken for panic. “The problem with AIDS is that the medical people just don’t know too much about it,” said Donnel Childers, the Florida state senator who has proposed mandatory AIDS testing for teachers. “They’re changing their minds every day and--hey, once you get this thing, you’re gone.”

Public officials have looked to the Centers for Disease Control for guidance, and federal scientists have tried to calm the fear.

A few weeks ago, they issued guidelines for the workplace that repeated, yet again: AIDS is transmitted via infected bodily fluids, particularly blood and semen. Almost always, it is spread by sexual contact or between drug users sharing contaminated needles. It cannot be spread by a handshake or a sneeze or any other casual contact. There is no value, they said, to the routine testing of workers--food handlers, teachers or anyone else.

But state and local officials often slough aside such assurances and dwell instead on more frightening revelations, such as the finding of the AIDS virus in teardrops.

“I think some of the fear out there is that people suspect the government knows more than it’s telling them,” Dr. Harold Jaffe, chief of epidemiology in the CDC’s AIDS branch, said regretfully. “That’s not only untrue, it’s very discouraging.”

Schoolchildren Force Issue

For much of America, AIDS--the panic--became vivid reality in September, when children went back to school.

Only a small number of school-age children have AIDS, and the CDC has said that only under very remote circumstances--a skin-breaking bite, for instance--would one student be likely to pass the disease to another.

But school districts around the country have agonized over AIDS policy: what to do, if and when. Most with an immediate problem have decided to exclude youngsters with the disease. Results have been woeful either way.

In Queens, N.Y., 9,000 students boycotted school when a second-grader with AIDS was permitted to attend. In Washington Borough, N.J., half the students left for home at the arrival of a healthy 9-year-old whose sister has an AIDS-related disease.

In Cleveland, Miss., 14-year-old Michael Felton, who got AIDS from a blood transfusion, was restricted to a home-study program. “He won’t have to worry about the bad things they say about him at school anymore,” his mother said when the boy died on Oct. 28.

In Kokomo, Ind., seventh-grader Ryan White was barred from class because he had the disease. But last week, a state hearing officer ruled that the boy should be allowed into school whenever he felt up to it.

Policy of Screening Teachers

In Oceanside, Calif., over a teachers union’s objections, the school board directed its staff to draft a policy requiring that teachers and other school employees be tested for AIDS.

“Parents are worried that we haven’t studied the disease long enough,” said Dr. Martha Rogers, another CDC epidemiologist. “We don’t discount that as a possibility, but we’ve studied the disease quite well--well enough to know that if casual transmission does occur, it’s extremely rare and done under extraordinary circumstances.”

Such statements--hedged with a scientist’s awareness that the improbable sometimes occurs--can alarm those they are meant to soothe. People want to be told things absolutely, no hedging, for certain.

“The trouble is people always ask: How do you know this or that won’t happen?,” said Dr. Jaffe, of the CDC. “But if you start focusing on what hasn’t happened--saying, what if it does--that’s really the end of the discussion. Policy can’t be made on one-in-a-million chances.”

The CDC has appointed task forces made up of top public health officials to discuss the value of certain controversial measures that might be needed to check the spread of the disease.

Among them are the quarantine of AIDS carriers who will not change their sexual practices and mandatory testing of certain groups, including intravenous drug users, pregnant women and applicants for marriage licenses.

‘Can’t Just Sit Back’

“I reasonably feel there are times when people are either irresponsible or malicious, and there has to be some coercive power applied,” Dr. Mason, the CDC’s director, said. “You can’t just sit back and twiddle your thumbs . . . .

“There is so much to consider. I’ve read reports that AIDS affects the central nervous system--behavior, memory, etcetera. We have to recognize that if that’s true, we may have people who are irresponsible not by will, but by loss of judgment. How does society deal with these people?”

The number of AIDS cases is doubling every year, according to the CDC. The public’s alarm is multiplying even faster. If state and local officials are both perplexed and distressed about the epidemic, they are reflecting a nation that is increasingly jittery.

In Atlanta, police refused to use a patrol car after a man with AIDS suffered a nosebleed in the back seat. Not until a month later was squad car 0623 returned to the road--after a state epidemiologist scrubbed it down with Lysol and bleach.

In Miami, a public hospital was the only home a 2-year-old boy ever knew. His mother died of AIDS. Though he showed no trace of the virus, it was not until a few weeks ago that state workers could find him a foster home.

In South Dakota, Episcopal Bishop Craig B. Anderson sent a letter to all of the state’s congregations, suggesting alternatives for worshipers afraid of getting AIDS while sipping communion wine. The faithful may dip bread in the cup and still receive communion, the bishop said.

Would-Be Blood Donor

In Abilene, Tex., a cafeteria worker at Hendrick Medical Center was offered free movie tickets if he took part in an employee blood drive. But at the blood bank he tested positive for the AIDS virus. He was fired. “You have to understand that Abilene is a very conservative, upstanding town,” explained Diana Cavazos, a hospital spokesman.

“The intensity of public interest is just fine, but the direction of it is completely errant,” said Dr. Harvey Feinberg, dean of Harvard’s School of Public Health.

“At this point, the essential thing is education. Every state ought to have in place a system for tracking the most current information about AIDS. And every government has an obligation to report regularly to the public about what is and isn’t safe.”

Most health experts agree that education is essential to ward off hysteria. It also is critical in getting people to change their sexual behavior--to be more cautious about how they have sex and with whom they have it.

Recently, rates of venereal disease among gay men have declined, and that is seen as evidence of less promiscuity, Dr. Mason said. Other studies have shown a promising trend toward mutual monogamy and more use of condoms.

“The AIDS virus won’t change,” Mason said. “It’s going to be around a long, long time, and it will be human behavior--and how behavior is modified--that will determine how many more cases we’ll get.”

Government’s role in changing behavior--coercive, supportive and educational--is something time will work out.

Decisions and Agonies

Yet, inescapably, the process will be a torturous one--the choices difficult, the mistakes lamentable and the despair of people like Donald Fanus dreadfully real.

In the end, there was no sense to the paper cutouts he made of his legs to keep track of his disease. The splotches were all over Fanus--on his hands, his head, inside his mouth. He could eat little more than an occasional Popsicle. A sip of water would make him gag.

Every day, another part of his life seemed to expire. Conversation irritated him. The television set sat silent. His reflexes failed. He could not walk to the bathroom. He slept 20 hours a day and still pleaded for rest.

His last night was spent at home, and his final energy was spent coughing. The paramedics who took the body away wore thick rubber gloves. The policeman who watched from the doorway guessed that the frail man in the bed had died of old age.

Times Staff Writers Nina Green, Bill Curry, Siobhan Flynn, Joanne Harrison, Wendy Leopold, Lorna Nones, Diana Rector, Laurie Shorten and Michael Wines contributed to the reporting of this article.