With over 8 million South Africans living with HIV, we can and should do so much better when in conversation with someone who has been diagnosed.

HIV and Aids remain a key health crisis facing South Africa, with Stats SA revealing that about 8.2 million or 13.7% of the population are HIV positive. While the Covid pandemic made it difficult for health authorities to continue curbing the spread of HIV and treating those living with it, tremendous work has been done to educate and inform South Africans about HIV. But is it enough?

According to Cindy Pivacic, who has been HIV-positive since 2004, while much work has been done to educate, there is still a gap in people’s understanding of HIV and their treatment of people living with it.

“Hearing you are HIV positive is a distressing experience, and in 2004, the judgment and discrimination were rife, so I chose not to disclose my status for another six years. Once I publicly revealed my status in early 2011, I realised how uninformed people were, and sadly, still are, about using appropriate language when speaking about HIV,” says Cindy.

Along with the naivety comes a long list of thoughtless and insensitive questions and statements such as, ‘Do you have AIDS?’, ‘Do you know how you got it?’, ‘What do you take for it’ and ‘How long do you have’ (to live). “People should be mindful of what they say. Before disclosing my HIV status, I heard all the negative connotations expressed about HIV and AIDS, and this prolonged my disclosing my status, resulting in me not pursuing the necessary medical treatment sooner.”

Although there has been some forward movement, unfortunately for many, the reality hasn’t changed. Many South Africans are still worried about the stigma associated with their status, which delays the process of seeking treatment for a condition we all know that, if managed, people can live very ordinary lives. Cindy adds that more appropriate questions could be, ‘How can I support you?’ ‘Can you explain the difference between HIV and AIDS?’, ‘How does your treatment benefit you?’ and ‘I am here for you’.

Working with her life insurance partner, AllLife, Cindy has taken it upon herself to educate better and inform South Africans on the appropriate language to use when discussing an individual’s HIV status. “Using respectful and inclusive language that promotes dignity, understanding, and empathy is essential. It is also critical that service providers like your life insurance company, for example, AllLife, know how to work with clients and their families affected by HIV,” she says.

These are some of the terms Cindy says are more appropriate to use:

• A person living with HIV: This statement firstly recognises that you are speaking to a person and secondly acknowledges them as a person beyond their HIV status.
• HIV-positive: When referring to someone diagnosed with HIV, this helps to focus on the condition rather than defining their identity along with their diagnosis.
• HIV status: Rather speak to someone’s status as it is a neutral and factual term describing whether someone has tested positive or negative for HIV.
• Undetectable: When Anti-retroviral therapy (ART) is successful, the viral load becomes undetectable, and the virus in their blood is extremely low, reducing the risk of transmission.
• Viral suppression: This refers to the successful control of HIV replication, usually through ARTs, resulting in a low viral load and improved health outcomes.

So, what are the terms deemed unacceptable or discriminatory? Here is some of the language to avoid:

• AIDS victim/sufferer: These terms are negative and perpetuate the perception that people living with HIV are helpless or defined solely by their illness.
• Diseased/infected: There is a negative stigma to these terms, and they add to the misconception that people living with HIV are dangerous or morally tainted.
• Clean/dirty: This is a no-no. HIV-negative individuals aren’t ‘clean’ and morally superior. Rather ask, ‘When was your last HIV test?’ or ‘Do you know your HIV status?.’
• AIDS patient: AIDS is the advanced stage of HIV; this statement doesn’t recognise that HIV is a manageable condition that millions of people live with.

According to Cindy: “It is essential to use language that promotes understanding, compassion, and respect when discussing HIV, as it helps reduce stigma, encourages open dialogue, and supports those living with the virus.”

Steph Bester, the CEO of AllLife, says it is essential for the industry to work with people living with HIV to better understand the challenges they face and to be able to be mindful and sensitive to their needs. “Being HIV-positive does not define a person. Cindy is proof of that. She is an inspiration to us and so many others and has helped us along our learning journey in this field. Changing the status quo starts with every single one of us.”