This week, Siyayinqoba Beat It! looks at some of the challenges posed by anti-retroviral treatment (ART). The increased availability of ART in the public healthcare sector means that a growing number of people living with HIV are being placed on treatment, yet many find it challenging to manage and adhere to their treatment regimens. To better understand the demands of ART treatment our Community Journalists meet a nurse from Soweto who is HIV positive and an elderly man from the Eastern Cape who is on ARVs while also taking medication for TB.
People living with HIV and on treatment have to take their pills everyday for the rest of their lives. This is what is meant by adherence and, if a person stops their treatment they will get sick again, the virus may become resistant to the treatment and they could die. If AR treatment is used correctly, it can improve a person’s health and quality of life and enable them to live much longer.
Thuli Madikane has been HIV positive for ten years. She was working as a nurse when, helping with a circumcision, she cut herself with a blade. She tested and found out that she had contracted the HI virus. After disclosing to her mother, she went into a state of denial, turned to traditional medicines which made her vomit and lose too much weight. After two years in and out of hospital, she started taking ARVs and now works for Persevere Until Something Happens (PUSH), assisting other HIV positive people to manage their ARV regimens.
Doing her patient visits, Thuli checks on Gail who had not taken her daily dose of ARVs. Thuli advises Gail to use her cell phone and the start times of her favourite TV shows to remind her when to take her medication. Thuli herself has often relied on an unofficial adherence counselor of her own – her daughter Gugu. From a young age Gugu understood the importance of her mother taking her ARVs. She often made sure her mom would take her medication, every day, at exactly the same time. Thuli recalls how Gugu, would say funny things like ‘Mom, don’t forget you are like a remote control, so charge your batteries.’ “She made me laugh, then I’d take my medication,” she says.
A large number of people living with HIV also test positive for TB, meaning they have two sets of medicine to take daily. The difference is that TB is curable, but adherence to the medicine is just as important. Nofenqe Sophazi, who lives near Mthatha, is one such patient and he relies on his cellphone and his (HIV negative) wife to remind him to take his treatment. “I take my HIV treatment at 8am, TB at 9am. If I forget, the HIV will increase and my death will be closer. So that’s why I shouldn’t forget to take my treatment every day, so that the HIV can be suppressed,” Nofenqe explains.
In South Africa, on the national ARV programme, an HIV-positive patient has two treatment options: first and second line. Each consists of three different anti-retroviral drugs that fight the HI virus in different ways, and each is only effective if all three drugs are taken strictly. If a patient’s adherence is bad, the HIV in the body becomes drug-resistant. The only way to treat drug resistant HIV is to move on to a different combination. However, at present, there are only two regimens available in the public sector. HIV that is resistant can be passed on to someone else and the drugs will not work for that person either.
It is therefore vital that patients adhere rigorously to their treatment regimens – a task that can be even more difficult when a patient is taking treatment for both HIV and TB simultaneously. Support is vital. “My wife gives me support. We set the alarm on my cell phone. She also cooks for me so that I can eat when the time comes for me to take my pills. Like Thuli’s daughter, Mrs Nofenqe is a vital support system to her husband. Asked how a negative spouse should treat a positive one, Nolusapho, Nofenqe’s wife replies simply: “Love him the way you used to love him and don’t change. If your husband is HIV positive you need to accept it first … Maybe when they understand the virus, people will be able to give support.”