Some HIV positive people have been defaulting on their treatment, and some have even died because of small issues relating to poor education on basic treatment.

Recently in the City of Mbombela a 22-year-old man died after stopping his treatment because he thought he had been given the wrong medication.

According to his sister Gloria Khoza, the man had not told anyone he was stopping his treatment.

At first no one knew that he wasn’t taking his ART until I found a few full bottles of the medication. When we tried to intervene, he just told us that the nurses had given him the wrong medication and he was not going to take it.

“At first no one knew that he wasn’t taking his ART (antiretroviral therapy) until I found a few full bottles of the medication. When we tried to intervene, he just told us that the nurses had given him the wrong medication and he was not going to take it. By that time it was too late. Two weeks after we found out that he wasn’t taking his treatment, he died,” said Khoza, who is also on ARTs.

“Since taking ARTs I have defaulted twice over the years. I know my reason may be stupid to others, but it was a real fear for me at that time. Both times I was given my treatment in a bottle that was different to what I was used to. Even though I knew it was important for my health, I couldn’t open my mouth to ask the right questions because I was so afraid of the nurses,” Khoza said, explaining how she herself had gone through a similar experience to her brother.

Education

Nurse Phumzile Msizi said while it was the responsibility of nurses to explain and educate patients on their ART treatment, it was also the responsibility of patients to ask for information and clarify things they are not certain about.

“I don’t understand why the blame is always put on nurses because it’s not always our fault. Patients must learn to open up and ask the right questions that relate to their health,” Msizi said.

But patient Suzan Ndlovu said nurses were often intimidating in their attitudes, and patients were often unsure of how to ask for information or help.

“Some nurses take their frustrations out on patients. When we ask questions they will say ‘You patients always complain about small things’. Imagine being told by a nurse that it’s not their fault that you didn’t go to school? I agree some of us didn’t go to school. But we don’t need to be reminded. All we are asking is for nurses to do their work properly,” said Ndlovu.

An edited version of this story appeared on Health24.