Mary Biba is the only female to have been appointed as a county secretary by the Sudan People's Liberation Army/Movement (SPLA/M). She has been instrumental in creating the Girls' Education Task Force to increase literacy among girls in Yambio County and has been at the forefront of efforts to prevent children from being recruited into the rebel army.
As a member of the New Sudan National AIDS Council, Biba is now spearheading her liberation movement's campaign against the disease in Yambio.
In an interview with PlusNews, Mary Biba spoke frankly about the difficulties of addressing behaviour change and the community's response to the disease, and outlined the way forward in curbing the spread of HIV/AIDS in the region.
QUESTION: Can you give me a picture of what the HIV/AIDS situation is like in Yambio - is it a problem yet?
ANSWER: There are a lot of people who are [HIV] positive. We just know by the symptoms and reactions that this is AIDS, because they cannot be tested. There are signs of diarrhoea, getting sick, vomiting, opportunistic diseases – so when all these appear, people know that it is HIV/AIDS.
People are just passing away, because there is nothing to control it. Although they have admitted they are positive, they are told there is no cure – they are told they can take ARVs (antiretroviral drugs) to prolong their lives, but there are no drugs. But there is nothing we can do.
But people know now - they are aware. It is explained how it happens – they are aware. They even expect treatment for TB (tuberculosis) and pneumonia because they have been told about it.
Q: You say people are now aware of the disease, but are they changing their behaviour?
A: Behaviour change is a problem. I think people here - most of them are after sex. You wonder why I say that? If a man dies from AIDS, another man will marry the widow immediately. So that means they are not caring for their lives. They are not really changing ... so they can prevent themselves [from becoming infected].
I have tried talking to them, telling them 'protect yourselves. Don't go with that woman, leave her alone - wait and see maybe her time will come and she will pass away'. But they are still craving ... and they marry her [the widow] just to get another wife. So their behaviour is not really changing, they are still spreading AIDS.
There is still not enough information about prevention from other methods of transmission, for example, blood transfusions in hospitals. The transmission from mother to child – babies are still being breastfed, even when the mother might be HIV-positive and has not been tested.
Q: When someone in Yambio County finds out they are HIV-positive, what support and care services are available to them?
A: The government has no revenue. There is nothing to help them. So, when they are positive and people accept that it is HIV, it is their family, their friends and NGOs, which can support them by giving them something – whether it is food, help in cultivating their fields, or anything they can do to help. There is no other help we can give them.
Q: What about stigma and discrimination? Is that why so few people have come forward to disclose their HIV status? Do they feel they will be stigmatised and treated like outcasts?
A: No I don’t think this is the case. When people admit [that they are HIV-positive], nobody in the community isolates them, their families take care of them, and other people are kind to them. In fact, they themselves [people living with HIV/AIDS], do not feel like they are left alone. I think people are generally kind and they are trying to help - they go and visit them, comfort them, pray together.
So, I don’t really think there’s much stigma here. For instance, there was one boy here who was a young soldier. When he found out, he went to his family and they put their money together to send him to [the Ugandan capital] Kampala for drugs. People know that HIV is around, and they know that everybody is affected, so they are willing to help.
Q: What policies has the New Sudan AIDS Council put in place to address HIV/AIDS?
A: The first one was for awareness, so that people should know that there is a killer disease. It must be openly discussed – there’s no point hiding it. So, this policy will make people talk about it in southern Sudan.
The second policy was to look for NGOs who can help us with the VCT [voluntary counselling and testing], so that people know whether they are positive. Then, if you are negative, we will be able to [take steps] to control and prevent the spread of AIDS. Those who are positive can learn how to live - if they have the power to buy drugs, this can help them.
Q: So are these being implemented on the ground?
A: Sure, they are being implemented because there are committees in every county running awareness and education campaigns. They are going out of their way to reach people – they are even moving by bicycles. They are doing their work ... sometimes they meet with the chiefs, the leaders, to update them. They are everywhere.
Sometimes at gatherings, they are doing dramas and there are groups who have even made up local dances to teach the people.
Q: What about the impact of the disease on women and children?
A: There are too many orphans, and it is especially bad for young girls. They are dropping out of school and getting married early or getting pregnant – they are practically children. They are attacked by HIV.
Education for girls is still low, so we are trying to encourage women through education. We now have a primary school for girls in Yambio, so we can teach them that education is the best defence.
Q: Yambio is said to have the highest HIV prevalence rate in southern Sudan - is enough being done about the epidemic?
A: There was a priest who announced he was positive last week, but people still want to know 'If I go [public] what will I do?' So, if we had VCT and some drugs, people would be eager. But we need action because these are still not in place. The priest is not the only one – there are more people waiting for testing, counselling and medicines.
... there is a new war in southern Sudan. Our first enemy is AIDS - it is no longer the Arabs. AIDS is more dangerous than the Arabs, because it kills more people than bullets.
This article was produced by IRIN News while it was part of the United Nations Office for the Coordination of Humanitarian Affairs. Please send queries on copyright or liability to the UN. For more information: https://shop.un.org/rights-permissions