By Rita Shelley
“Both Nebraska and Iowa have their first confirmed cases of AIDS – acquired immune deficiency syndrome. AIDS is a disorder of unknown cause which impairs the body’s defense system and leaves victims vulnerable to infections and diseases. About 1,600 cases have been reported nationally between January 1981 and June 20, 1983. Nearly 40 percent have died.”
“The time has come for blacks as a race and a nation to understand this enemy we call AIDS and its capabilities. As of June [1991] in the United States, 54 percent of all females with AIDS were black, 38 percent of all intravenous drug users with AIDS were black, and 55 percent of the children born with AIDS were black.” (Omaha AIDS Educator Thurman Hoskins, Jr.)
Dr. Mark Goodman MD, AAFP, AAHIVS, now a CHI physician and Creighton University Medical School professor, recalls first hearing about what would become the epidemic that would take a worldwide toll of 36 million as of 2022. It was 1981, the year Goodman began medical school at UNMC. Medical communities on the east and west coasts were confronting the first reported cases of AIDS. Because HIV, the virus that leads to AIDS, can remain dormant for a decade without symptoms, it will never be known how many people had already been infected, had unknowingly infected others or the blood supply, or whose deaths had been wrongly attributed to cancer or pneumonia. Nor was the immensity of the problem yet known, but a few began to plan for it.
A mission is formed
Among those who prepared were a group organized in 1983 as the Nebraska AIDS Project. They began organizing support for potentially HIV-positive clients, those who already been diagnosed, and those who were at risk. While some locals still dismissed AIDS as a “gay cancer” that wouldn’t touch the Midwest, forty NAP volunteers got to work. People in need of information and support at least had a number they could call. The project that had taken seven months to launch eventually became one of the first state-wide AIDS projects in the country. Offices were added in Lincoln and western Nebraska.
Judith Sexton was the first social worker in Nebraska to work solely with HIV/AIDS patients. Her territory was southwest Iowa and the entire state of Nebraska.
“The general population had no idea what was happening. There was fear surrounding hugging, using the same water fountain, or using the same eating utensils. Fear of AIDS patients was rampant. Ignorance and the wrath of God was everywhere,” Sexton said.
“Society is so filled with denial when it comes to this issue. Our Judeo-Christian upbringing says there are two taboos – death and sexuality. With this issue, we’re talking about both.” Darrell Cole, AIDS patient
“AIDS is most commonly spread through behavior that most people consider abnormal and abhorrent….That isn’t a value judgment. It’s merely an observation.” Omaha World-Herald editorial, 1991
In the medical profession, too, there had been visceral fear: “We were so scared,” Dr. Goodman recalls. “Was it transmitted by air? By touch? Was it safe to be in the same room?” Medical staff wore head-to-toe protective gear. Patients were isolated and died alone.
Fear, Goodman said, was eclipsed by grief “because everyone was dying.” Goodman’s losses were both professional and personal. Once, his address book was filled with 250 names. Two years later, half of those friends, acquaintances, and colleagues were gone. Within another two years, “almost everyone [in the address book] was dead.”
Dr. Mark Goodman, MD, AAFP, AAHIVS, Omaha-based physician and medical educator, remembers the early days of the AIDS epidemic. His current research interests include mental health and HIV medicine health ethics, LGBT health concerns, and hospice care. Source: https://www.creighton.edu/campus-directory/goodman-mark-d
In 1987, NAP added counseling services on Thursday evenings at its first physical location, the Metropolitan Community Church. NAP’s hotline had taken 3,000 calls the previous two years. Medical writer Mary McGrath wrote that “no ledger tallies the amount of money, time, and energy that has been spent battling AIDS in Nebraska since the first case was diagnosed in 1983.” Nebraska’s state lab had processed 4,000 AIDS tests. The Douglas County Health Department had dedicated two AIDS staffers who were working 100 hours a week. John Weston, director of clinical services for DCHD, told McGrath that “’unwarranted fears, misconceptions and hysteria add to the work load.’” By the end of 1988, half of the people diagnosed with AIDS since 1983 in Nebraska had died.
To help combat the social isolation that often followed a diagnosis, NAP added a “buddies” program. One buddy – “Ellie” – a nun who was also certified as a psychotherapist, helped a woman whose tainted blood transfusion had infected her with AIDS to find an apartment. The two also attended a support group and monthly interdenominational services together. Another “buddy” comforted men through the last days of their lives.
“I’ve put myself in the Lord’s hands. I try to focus on the things I can do and try not to dwell on the things I cannot. My biggest fear is leaving my family behind. There are so many things I want to tell my children…when they graduate from high school, on their wedding day, or when their first child is born. There are so many things I want to share with my husband…growing old, watching our children mature…sharing a love that lasts forever.” Debbie Bond, 1951-1993, mother of three, infected with HIV from a transfusion after the birth of her youngest child.
Brothers Ron and Rick Plankinton from Columbus, Nebraska, received blood transfusions as treatment for hemophilia. Ron died in 1992 at age 26. Following his diagnosis, it had taken him three years to find a company that would hire a person with AIDS. After only three months, he was too ill to work. Rick died on his 33rd birthday in December 1994. His daughter Sarah died 10 days later. She had been diagnosed when she was four years old. Laura, Rick’s wife and Sarah’s mother, died in May 1995.
“I remember getting a phone call from parents in the hills of Council Bluffs having just learned their son was diagnosed with AIDS and was coming home. I met with them in their home and coordinated medical care at UNMC and provided them all the information I could to put them at ease for his return. Upon his arrival he became one of my NAP clients. It was an honor to be the connection to each of these clients and their families. All welcomed me into their homes. I have never forgotten them.” Judith Sexton, NAP caseworker.
NAP Counselor Tamma Black and Lodgepole, NE, resident Debbie Bond who had been infected by a tainted blood transfusion. Debbie died in 1993 at age 42. Source: Nebraska AIDS Project Quarterly, Autumn 1992.
We gather together…
But the time soon came when the work that needed to be done exceeded even what NAP’s platoon of volunteers could manage. Money was raised to pay staff. The greater the need for testing, education, and outreach, the greater the need for financial support. In 1991, NAP received grants from the Peter Kiewit Foundation, Union Pacific, and the Woods Charitable Fund. The same year it received volunteer hours valued at $150,000 – $52,000 from individuals and small grants. Local playhouses donated portions of proceeds to NAP. Musicians performed benefit shows. A Walk-a-Thon raised $12,000. The Imperial Court of Nebraska raised money for needs such as rental assistance.
No effort was too big or too small.
By far the most capacity-building fundraisers were annual Nights of a Thousand Stars galas. For the first gala in 1993, NAP recruited 60 hosts to serve dinner from their homes, followed by dessert and dancing at Mutual of Omaha’s Dome. Dinners also were served at The Max Nightclub. The NAP Client Counsel organized a potluck at Kountze Memorial Lutheran Church. The inaugural event raised $50,000 that was matched by another $50,000 from Terry Watanabe, president of Oriental Trading Company. For a 2007 Thousand Stars night, Omaha Star reporter Walter Brooks described what made these events magical for those who participated: “Of course the heart of the evening is when several thousand people converge … to eat, drink, and dance until 1 a.m. It’s fun and truly one of the greatest mixes of people to be found in Omaha in one night. Gay people, straight people, transgender, transvestites, city folk, church folk, Caucasians, Asians, African Americans, Latinos and Native Americans – everybody rolls together at “Night of a Thousand Stars.” In 2004, Lincoln hosted a Night of a Thousand Stars featuring KC and the Sunshine Band. Nights of a Thousand Stars have continuously supported NAP for more than thirty years.
NAP and Omaha’s faith community also combined as catalysts for bringing spiritual comfort to all those suffering from, or impacted by, devastating-beyond-words losses. Unique at the time to the social and religious impacts of AIDS, many people who were dying had no one to turn to for support. Their families had rejected them or weren’t nearby, partners had died; missed work became lost income, lost health insurance, evictions, and isolation. Brother William Woeger, an Omaha Archdiocese chaplain, began an organization in 1986 that became the Omaha AIDS Interfaith Network. The network consisted of clergy from 30 Christian and Jewish congregations. “Our strength is that we focus on pooling our resources to help these people,” Woeger said. At Saint Cecilia Cathedral, the network and others hosted memorial services at which the names of people in Nebraska and Council Bluffs who had died of AIDS were read.
As part of their education, outreach, and prevention missions at a gay bar, AIDS staff and volunteers distributed condoms and literature about HIV-AIDS on Saturday nights. African American churches, the Charles Drew Health Center, and the American Red Cross Heartland Chapter hosted an annual Black Church Week of Prayer for the Healing of AIDS. In 2002, daily events included AIDS education presentations following Sunday services, choir performances, a Women and HIV presentation, a youth night, a Soul Food luncheon, and a Bowl-a-Thon. AIDS testing was provided at the NAP office and Charles Drew Health Center.
Creighton Alegent Old Market family medicine clinic staff participates in the Nebraska AIDS Project’s Awareness Walk in 1994. Dr. Mark Goodman is in 2nd row, third from left. Source: Dr. Mark Goodman.
50 Calls in One Afternoon
In the fall semester of 1991, a Creighton Dental School student disclosed to the school’s leadership that they had AIDS. The dental school notified the student’s 47 patients that they might be at risk and provided free counseling and testing. Praised for their professionalism, the student withdrew from the dental program’s clinical section.
“The media,” NAP Executive Director Gary George from 1991-1995 recalls, “began to roll in to my office.”
Dr. Marvin Bittner, an infectious disease specialist at Creighton was quoted saying, “I think people ought to know that the [medical review panel] might decide that the student can’t return. The safety of the patients is really the bottom line. It may not be possible for the student to come back.”
Weeks later, the Los Angeles Lakers’ greatest point guard of all time dominated the November 7, 1991 news cycles: “Because of the HIV virus that I have attained, I will have to retire from the Lakers. Today.” The source of his infection, he said, was unprotected sex with a woman who was HIV-positive.
All five telephone lines lit up at NAP. Fifty calls came in on the afternoon of Magic Johnson’s announcement. What is the difference between HIV and AIDS? What do I tell my child who has Magic Johnson posters all over his room? Should I get tested? Where can I get tested? When can I be tested?
“All heck broke loose,” caseworker Judy Sexton said. “I will never forget that day. Testing went through the roof. People were scared!”
Douglas County Health Department’s Betsy Kimball took five calls between 8 and 9 the following morning, five more than usual. Phone calls to NAP doubled and then tripled the need for counseling, testing, a statewide hotline and speakers bureau, pastoral care, and support services such as emergency funds for people who had lost their jobs, rides to medical appointments, and support groups.
On the first day after Johnson’s announcement, NAP’s volunteer phlebotomist had administered tests to 40 people, four times the previously daily amount. Their call volume doubled. Within a week of Johnson’s announcement, the county health department was scheduled into mid-December, twenty-five people each week. The Charles Drew Health Center at 2201 N. 30th Street increased its testing capacity from one evening a week to every day.
In response to growing visibility (and positive case numbers) NAP also continued to advocate for AIDS and HIV-positive members of the community. Notably, they called for review of Douglas County Corrections policies, which placed prisoners who identified as gay or as drug users in isolation cells for 23 hours a day. Medical advisers advised testing all prisoners, regardless of their sexual or drug activity, and isolating them “humanely.” A policy review was designated but the committee’s work ended abruptly when the Douglas County Board of Health disbanded it. Barbara Braden, NAP board chair and dean of nursing at Creighton University, weighed in, stating that “politics, not science, had driven the board’s decision.”
In June of 1993, when Nebraska Department of Social Services Director Mary Dean Harvey cancelled AIDS-relevant training for the department’s staff, she was praised by an influential publisher: “Such plainspokenness is unusual in public life. It’s particularly unusual in the social service industry with its hypersensitivity toward the needs of any group that claims victim status, welfare recipients and co-workers who happen to be gay.
NAP today
Since 1981, more than 700,000 people in the U.S. have died from HIV-AIDS. Worldwide, the toll has been 36 million. But currently, owing to once-unimaginable medical treatment, prevention, and education, approximately 1.2 million Americans are living with AIDS. Some of them are Dr. Goodman’s patients, ages 10 to 88, at his CHI medical practice. It’s a chronic disease, but, Goodman adds, survivable “background noise” in patients’ lives.
As of 2022, NAP continues to offer testing and other supportive services while advocating and educating from satellite locations in Omaha/Southwest Iowa, Lincoln, Kearney/Central Nebraska, Norfolk, and Scottsbluff/Panhandle. It still hosts an annual Night of a Thousand Stars.
Magic Johnson came out of retirement and played professional basketball for 15 more years. At age 62, he is an advocate for HIV/AIDS prevention and safe sex.
You can learn more about NAP’s current programs, services, and mission here.
Download Rita Shelley’s blog post with full citations here: Nebraska AIDS Project-1983 to Today