Inter Press Service - April 9, 2009
Mantoe Phakathi interviews SYLVIA KHUZWAYO, expert client

Khuzwayo, a mother of three who has been living with HIV for eleven years, is an "expert client" for international humanitarian organisation Mèdecins Sans Frontiéres, which advocates an expanded role for people living with HIV/AIDS in fighting the spread of the disease.

IPS: When did you find out that you were infected with HIV?

Sylvia Khuzwayo: I tested positive for HIV in 1998 and I started treatment in 2001. [At the time] we used to buy ARVs and I used to spend $90 on the tablets monthly.

IPS: What motivated you to get tested?

SK: When my husband died, I joined an HIV support group called Swaziland Aids Support Organisation (SASO). Although I wasn't aware of my status then, I just took an interest in SASO because they opened up their membership to people who also didn't know their status.

I liked working with SASO because I enjoy doing charity work. At SASO they motivated me to get tested and members were very supportive when I disclosed my status.

IPS: Now you work as an expert client at MSF. What does your work entail?

SK: Expert clients are people who have tested positive to HIV and are open about their status. Expert clients draw from their own experiences to help people living with HIV in their communities come to terms with living with the virus.

We give testimonials on how it feels to be living with HIV. Many people have since realised that living with HIV is not as bad as they thought it was. We also encourage early testing and disclosure to their families and friends.

IPS: How does disclosing one's status help the person to cope with living with HIV?

SK: Openness helps to reduce stigma and discrimination. In the communities people still believe in witchcraft and when somebody dies they start blaming some family members for bewitching a person who has died from AIDS-related illnesses.

Disclosing your status to your family earlier would help do away with finger pointing on the cause of death once a person dies of AIDS-related illnesses. A lot of people are still using traditional healers and in cases of HIV/AIDS we encourage patients to use clinics and hospitals.

IPS: What qualifications should an expert client have?

SK: An expert client is someone who is a role model to the community. Such a person should demonstrate that indeed there is life after being infected with HIV. They must be clean and show progress in their lives.

There is no academic qualification needed because expert clients use testimonials to educate people about HIV/AIDS. They don't necessarily need academic qualification but they must try to get as much information as possible on HIV/AIDS because people are looking up to them. There are so many misconceptions out there and expert clients should be on top of the game to give people the correct information.

IPS: What has helped you to allay the fears that people have about HIV/AIDS?

SK: Apart from reading, I also use the internet and listen a lot to the radio to get more knowledge about HIV/AIDS. Remember HIV/AIDS is very dynamic and it keeps changing all the time and an expert client has to use different media to enrich their knowledge. I also interact with doctors at MSF to get more information from them.

It is also important for expert clients to undergo training on HIV/AIDS. I did a three-month course on HIV counselling recently which had different components including home-based care, palliative care, positive living, stress management and public speaking.

IPS: What impact have expert clients had in the fight against HIV/AIDS?

SK: Expert clients have made a lot of difference in the communities they live in. They have helped a lot of people to be open about their status.

For people on treatment, you find that most of them undergo side effects such as losing your body shape because your bums would shrink while your tummy and breasts enlarge. This is something I went through and I was really frustrated.

As an expert client who has been through this, you have to encourage people to accept their new bodies. I always tell people that it's better to have poor body shape than no life at all.

IPS: You have no health qualification yet you deal with HIV/AIDS, a subject that touches a lot on health issues. What are the challenges?

SK: When expert clients in the country were introduced in the response against HIV/AIDS, doctors and nurses felt we were misplaced because we have no health background.

But our relationship with health professionals has since improved because they later realised the need to include people who are living with the virus in counselling people who have tested positive.

Expert clients relate better to people who have tested positive because we tend to undergo the same experience.

IPS: So where does one find expert clients?

SK: Expert clients are found only at clinics. We speak to people from communities who visit the clinics. But there is a serious need for expert clients to be in communities such that when there is meeting at chiefdom, an expert client should be there to address people on HIV/AIDS.

At MSF we emphasise that expert clients should work in clinics from their communities so that they relate to people who know them very well. This also provides job opportunities to a lot of people out there.

IPS: Do we have as many men we women as expert clients?

SK: Unfortunately a lot of men are still afraid of being open about their status. Out of eleven expert clients at MSF we have only one man. We don't only need men as expert clients but we also need people in government leadership, such as a minister, who will disclose their status so that people see that indeed life after HIV.

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+ South Africa: Returning Sick - HIV, Illness, Death and Migration (http://www.aegis.org/news/ips/2009/IP090409.html)

+ South Africa: Nurses Should Be Backbone of ARV Treatment (http://www.aegis.org/news/ips/2009/IP090403.html)

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