This Kansas doctor started fighting a scary new disease 40 years ago

December 2, 2020 3:30 am

Donna Sweet, a doctor of internal medicine at the University of Kansas School of Medicine-Wichita and nationally recognized expert on HIV and AIDS, saw her first AIDS patients in Kansas in 1983. (University of Kansas School of Medicine-Wichita)

I’m old. Old enough to be among those who had familiar feelings earlier this year when a mysterious disease broke out, and no one was sure how it spread, and everyone quickly learned what the letters CDC stood for, and we watched the death counts rise, and a doctor named Anthony Fauci was the government expert.

Nearly 40 years ago, the disease was AIDS.

Donna Sweet, a doctor of internal medicine at the University of Kansas School of Medicine in Wichita, remembers those days too.

Now a legendary figure in HIV and AIDS circles, Sweet saw her first patient with the disease in 1983. The fact that a doctor in Kansas was seeing such patients in those days was extraordinary.

“She and her staff are known as huggers, which she said may have done more for 1980s patients since so little was understood about the transmission of the AIDS virus,” the Wichita Business Journal noted in an article last year bestowing upon her a lifetime achievement award and calling her a health care hero. “Because nobody else would touch them,” Sweet said of her patients.

“I felt very trusted,” Sweet told me. “I tried very hard to put into practice what I truly believe: All comers need quality health care regardless of their social situation or ethnic background and their disease. I felt very good that people would share with me their secrets and their lives in order to get what little help I could give them at that time.”

Some of the patients who started with her 25 or 30 years ago are still alive, she said.

I was talking with Sweet on Tuesday. It was Dec. 1, the date recognized annually since 1988 as World AIDS Day. Last year, 38 million people were living with HIV around the world and nearly 700,000 people died of AIDS-related causes.

I asked if she saw parallels between AIDS and COVID-19.

“The stigma is certainly there,” she said. “It’s a different kind of stigma, but again people have taken to blaming other people for the spread instead of blaming the virus. We certainly lived with that stigma, with HIV being sexually transmitted as well as by injected drug use. We still haven’t gotten completely rid of that stigma, but we still keep trying.”

She also sees parallels with people trying to shelter in place and decrease the spread by changing their behavior.

“It was scary back then for the patients and for people everywhere because nobody really knew much about it,” she said. “That’s a parallel to COVID — the fear of the unknown is what incites a lot of bad, unreasonable behavior.”

There’s another eerie echo.

Donna Sweet in the late 1970s. (University of Kansas School of Medicine-Wichita)

“When I was giving lectures in the 1980s and ‘90s, trying to get people to treat my patients as human beings and get rid of the fear and hysteria,” she remembered, “I would say, ‘Thank goodness this is not a respiratory virus. If it was, then you could worry about touching the telephone, head sets, chairs. AIDS isn’t spread that way — it’s bloodborne and in bodily fluids. Avoid blood, avoid sex, and you don’t have to worry about it.’ ”

Now, though, someone with their mask down in the vicinity of an ill-timed sneeze could end the lives of many others.

Seven years after she saw her first AIDS patient, Congress passed the Ryan White CARE Act to funnel money into caring for and treating people with HIV and AIDS.

“Kansas got some of that money in 1993-94, and we really started to see a big increase,” Sweet remembered.

She kept working and witnessed what had been a lethal disease for which there was no medicine to one that is now a chronic, manageable illness.

“Now most people are easily treated with one pill once a day and they live to the same age they would if they didn’t have HIV,” she said. “It’s truly a remarkable change. Now there may be a vaccine in a month that will put this down, as it should be, as the last pandemic and not the current pandemic.”

That will be because of science.

“We know how to help you not get infected,” she said. “So I would say to all Kansans: trust science, trust doctors. Don’t believe everything you see on social media. We have good scientific data on this, but many people are still treating this as some kind of political hoax and it’s not.”

She repeated what the doctors always say: Maintain social distance. Wash your hands. Wear masks.

After our conversation, I thought about another parallel. Back then, people realized they could use a simple but effective form of protection. Condoms might have been a weird inconvenience at first, but soon they were party favors and drag queens threw them like candy from pride parade floats. We knew they saved lives.

Our stories may be republished online or in print under Creative Commons license CC BY-NC-ND 4.0. We ask that you edit only for style or to shorten, provide proper attribution and link to our web site. Please see our republishing guidelines for use of photos and graphics.

C.J. Janovy
C.J. Janovy

C.J. Janovy is a veteran journalist with deep roots in the Midwest. She was the Opinion Editor for the Kansas Reflector from launch unit l June 2021. Before joining the Reflector, she was an editor and reporter at Kansas City’s NPR affiliate, KCUR. Before that, she edited the city’s alt-weekly newspaper, The Pitch, where Janovy and her writers won numerous local, regional and national awards. Her book “No Place Like Home: Lessons in Activism from LGBT Kansas” was among the Kansas Notable Books of 2019.