AIDS Comes Home to the Heartland as Its Sons Retrun to Die : Nebraska, With 37 Cases, Gears Up to Face the Disease

Dr. Jonathan Goldsmith remembers his first encounters with AIDS patients in 1984. Only three Nebraskans were sick with AIDS then, but “I realized we’d better get our act together,” he said.

“People have anonymous sexual contacts all over America. No place is immune,” said Goldsmith, director of the University of Nebraska Medical Center’s Viral Syndrome Clinic here. “I tell people that if they want to know what’s going to happen in the future in Nebraska, just look at New York and San Francisco now.”

About 42,000 Americans have been diagnosed as having acquired immune deficiency syndrome; nearly 25,000 have died. Health officials estimate that 1 million to 1.5 million Americans carry the AIDS virus.

9 Still Alive

Nebraskans account for only a fraction of those numbers. As of Oct. 29, 37 had been diagnosed as having AIDS; nine were still alive. Eight hundred to 2,000 are believed to have been exposed to the virus.

But throughout this politically conservative, fiscally frugal state, among social workers, doctors, ministers, business leaders, educators and politicians, one refrain plays over and over again: We’ve been lucky.

Because AIDS first surfaced elsewhere, Nebraskans have had a chance to learn from actions taken in New York, California and other places with high-risk populations such as homosexual and bisexual men and intravenous drug users. Others have contracted AIDS through transfusions of blood contaminated before stringent screening precautions were initiated. Hundreds of babies infected with AIDS have been born to mothers with the disease.

“We are in the midst of two epidemics in Nebraska, and in this country,” said Dr. Gregg Wright, director of the state Health Department. “There is an epidemic of the virus that spreads rapidly through some populations, and an epidemic of fear that spreads rapidly through much more of the population.

“In Nebraska, we have a strategic advantage. Both epidemics are preventable. We have a well-educated population, and education is our primary weapon against both.”

‘Susceptible to Paranoia’

“We want to be proactive, not reactive,” said Tom White, editor of the Lincoln Star. “We are very good at denial in Nebraska. I worry that unless we become informed we are very susceptible to the paranoia which has gripped other places.”

White attended a seminar on AIDS at a convention last April and returned home determined to help educate Nebraskans about the disease.

The result is a statewide AIDS Awareness Week, Nov. 6-13, organized by the state Health Department, the Journal-Star Printing Co., the Nebraska Educational Television Network, the Lincoln-Lancaster County Health Department, other government agencies and local communities.

On Nov. 10, White’s newspaper and the Lincoln Journal will distribute 80,000 copies of an eight-page tabloid on AIDS to subscribers. An additional 13,000 copies will go to all junior and senior high school students in Lincoln. The tabloid is also available for free reprint to all Nebraska newspapers, and White estimates other papers will distribute at least 100,000 more copies.

“Unless Nebraskans come to grips with it, (AIDS) will grow as a threat to lives and the social fabric of our state,” White and Gary Seacrest, executive editor of the Journal, write in the tabloid’s “open letter to the community.”

‘Can Halt the Spread’

“We present this special section to educate and to stimulate informed public dialogue. . . . With education and understanding, Nebraskans can halt the spread of AIDS and the fear that it harbors.”

The week is to end with a live Nebraska public television show, “AIDS--Living Through the Epidemic,” that will bring together 350 community leaders and citizens in a town meeting to question experts about medical research and the disease’s social, economic and ethical ramifications.

Ann Lamb, a social worker who counsels AIDS patients at the university’s Viral Syndrome Clinic, believes this is “a very critical time because the numbers are doubling every 15 months.”

Lamb and clinic director Goldsmith, a specialist in blood disorders, now travel the state, often driving hundreds of miles on their own time, to talk about AIDS with anybody who asks them to come.

“The harder you hit, the better off you are,” said Lamb. “In the question-and-answer sessions, contagion is the major issue. We try to give permission for fear, we tell people it’s OK to be frightened, but if we keep bombarding ourselves with facts we can deal with that fear.

‘AIDS Is Society’s Test’

“Fear can bind us as a society. It doesn’t have to make us malignant; it can make us compassionate. AIDS is society’s test,” Lamb said.

“Nebraska is such a secure, nice, safe place with Midwestern values. Yearly our farmers go through crop failures, blizzards and tornadoes together. You know your neighbors, you look out for each other. I want to believe that is what will happen now that AIDS is here.”

Goldsmith agreed.

“AIDS is a rallying point,” he said. “The enemy is the virus, not the people who have it. . . . We’ve so far been smart enough to think about it here before it reaches crisis proportions. We’ve added personnel at the clinic in a timely fashion, but we’re always at the outer limits.

“Because I believe this is the major health problem of the 20th Century, I spend a lot of time teaching other health care providers how to deal with it. Whether they know it or not, it’s coming soon to their neighborhood.”

A legislative committee held its first AIDS hearing this fall to begin drafting laws involving AIDS-related matters.

Asks Tough Laws

Wright asked the legislators to provide more money for AIDS education and to toughen laws protecting medical records and a person’s right to privacy.

Goldsmith told them about burnout worries among doctors and nurses who treat AIDS patients.

Funeral directors want a provision that would require specifying whether a person died of AIDS before they begin embalming procedures.

Police requested mandatory AIDS education for all law officers.

A psychologist called for designated AIDS-free hospitals because “they would make money and have few staffing problems.”

A Nebraska Civil Liberties Union leader told lawmakers he believes they’ll be compelled to pass laws barring discrimination against people with AIDS.

Legislative Debate

State Sen. Don Wesely of Lincoln, who chaired the hearing, predicted the Legislature would debate several AIDS-related bills early next year.

Nebraska has already set up six sites for free, anonymous AIDS virus testing and counseling. Two are in Lincoln, and the others are in Omaha, Grand Island, Scottsbluff and North Platte.

Although most support efforts began in Omaha, coordinators say the networks are spreading to smaller towns.

Nebraska’s gay and lesbian population got the first networks going, but mainstream groups such as Planned Parenthood and the American Red Cross are now involved, helping with education efforts.

Volunteers provide emergency housing and food for people with AIDS who are stranded while traveling or are evicted from their homes. The Red Cross’ 24-hour hot line in Omaha matches needs with people who can deal with them.

Volunteers have organized a buddy system to take patients on errands and to doctors’ appointments, shop for groceries and clean their houses.

Project Concern

The Nebraska AIDS Project’s toll-free hot line operates seven nights a week. Project Concern is an information and referral service based on models in Los Angeles, Boston and San Francisco.

Roman Catholic Archbishop Daniel Sheehan wrote a pastoral letter on AIDS last March and organized a task force. From that group came the AIDS Interfaith Network, representing clergy from 13 different denominations. A monthly ecumenical service now draws about 100 worshipers.

An AIDS support group meets in Omaha the first and third Wednesdays of each month. Held at a secret location to avoid harassment, it is open to anyone trying to come to grips with AIDS. Attendance averages 40 people.

“All these groups are beginning to overlap,” said Christian Brother William Woeger, who founded the support group in 1985 and is a major force in the interfaith network.

Woeger recently started a monthly potluck supper for the people who counsel and care for AIDS patients.

‘Tore Door Off’

“I decided we had to deal with our own stress after I tore the kitchen sink door off one night just because I couldn’t find the Ajax,” said Woeger. “I didn’t rip that door off because the cleanser was missing, but because of the insidious grief I was feeling.”

Like so many whose lives are now dominated by a disease they’d never heard of when they received their medical diplomas or social work degrees, Goldsmith has had to come to grips with AIDS emotionally as well as professionally.

“I had to learn that AIDS was inexorable: You tell someone the diagnosis and you know they’re going to die in a year, or maybe 18 months if you’re lucky or good.

“The first case you get you think, ‘I’m smarter, I’m better.’ But you’re not. These people are going to die no matter what I do,” Goldsmith said.

“As Uncle Milty said, this is bigger than both of us, than all of us. We in Nebraska, and everywhere else, must realize that there are levels of care that have nothing to do with dispensing medicine.”