Advocate shares story of living with HIV

By By Jaime Winston

By Jaime Winston

Toni Johnson was 21 when she learned she had a deadly infection.

“That was a life-changer,” said Johnson, the director of the People with AIDS Coalition of Utah. “All I knew was that it killed you, so it was scary.”

Johnson spoke to members of the U Association of Future Female Physicians on Tuesday about her battle with HIV and how they should treat patients who have the condition. The association was created to educate and support women going into medicine and is now a nationwide program, said Maya McSpadden, founder and national president.

Johnson was attending Salt Lake Community College in 1993, studying accounting and was engaged to be married when she experienced fatigue for several months. She thought it was the flu until she received an unexpected call from her ex-boyfriend’s new girlfriend, who said she should get tested.

Her ex-boyfriend had HIV and knew about it three years before he gave it to her.

“I was not the first person he impacted,” she said.

When she confronted her ex-boyfriend about the illness, he admitted he injected drugs and was a bisexual prostitute while they were dating.

Johnson’s fiance stayed with her for two weeks, until he got his negative test results — then he left her. She told her mother about her illness during a lunch date at Pizza Hut. When her father found out, he gave her a hug with tears streaming down his face, Johnson said.

“So many people with HIV are not anywhere near as blessed as I am,” she said. “They don’t have the support of their families.”

Johnson stressed to future physicians the importance of not judging patients just because they have HIV.

“If I tell them I got it through a blood transfusion, they feel bad for me,” she said. “If I tell them I got it from having sex, then my morals are in question. If I tell them I got it from injecting drugs, I’m a bad person.”

Johnson also told the students that they should leave their prejudices at home and just treat patients like human beings.

“It was a good reminder that we need to look at patients for who they are and not stereotype them as someone new,” said Laura McCollum, a senior in biology and an associate member.

After someone is checked for HIV, Georgia Ennis, a volunteer with HIV at the coalition, suggests getting tested again six months later.

“It takes about six months to develop,” she said, “Your first test could be negative-positive and your next positive-positive.”

Johnson said the HIV side effects have given her swollen lymph nodes, hair loss and herpes outbreaks around her mouth and chest. She is on many drugs to treat her HIV which she might have to switch once she builds a tolerance to them.

Johnson said her medication costs $2,500 per month, some of which is paid through the Ryan White CARE Act, named after a young man who contracted HIV through a blood transfusion.

Despite the side effects and cost of the disease, Johnson remains optimistic.

“You got to keep truckin’,” Johnson said. “It doesn’t mean life is over.”

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Maegan Burr

Toni Johnson, Director of People With AIDS Coalition of Utah, speaks about how doctors can be more genuine and not stereotype AIDS and HIV patients.