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Challenging the government

Many of the testimonies touch on government policies that affect people living with HIV – particularly the South African and Namibian governments’ policies on access to ARVs.

Some of the testimonies are more politicised than others, with the narrators emphasising the influence that social movements and groups of people living with HIV and AIDS can have on government policies and practices.

There is a sense that the advocacy and visibility of social movements and support groups could also keep government policies ‘real’ – that is, connected to and responding to the realities of people living with HIV and AIDS.

We challenge the government

We challenge the government a lot, but many times we don’t get what we really want from the government. It’s like the government are putting us [up against] a brick wall. We really want the government to bring change so that all people can go on, can rely on the government and not just on TAC. I just hope that in the future we can work with the government and the government can provide us with what we really need.

Sylvia (female), member of TAC, South Africa

Connecting MPs and communities

I am working with a member of parliament in a project called Parliamentarians for Women’s Health that has been funded by the Bill Gates Foundation. This is a consortium of five international organisations in which ICW is a partner. So I am working with the MP on women’s health with a particular focus on my HIV women.

We need to educate MPs because when we had our first meeting we could see that they don’t have the knowledge, and we need to educate them about why [they should] focus on positive women. After that, we need to take them to the communities because most of the time they sit in their office, they don’t know the real situation in the communities.

We have started already, we had a workshop training for them – and this was [in answer to] a request from
them. They know that HIV/AIDS is here but they don’t know the deeper issues.

Jeni (female), member of ICW, Namibia

How are we going to eat treatment when we have no food in our houses?

I want [TAC] to demand more jobs and treatment. Some of them ask us: how are we going to eat treatment when we don’t have food in our houses? Because the government is saying if your CD4 count is more than 200 they won’t give us disability grant.

The government must stop that. The government must not wait for you until you are below 200 because you might die – and the government knows that.

Female, member of TAC, South Africa

Linking government policies with clinical practice

I know HIV cannot stop at this moment, but it would help if the government gave all people ARVs in the hospitals. I would ask TAC to try to go to the clinics and talk to those in charge. They must support the prevention of mother-to-child transmission.

I love to talk to people who are HIV positive. I am on their side. There must be a PMTCT [prevention of mother-to-child transmission] programme at the clinic. The person who is sick must not wait for a long time. There must
be a superior clinic for HIV-positive people because there are still people who are denialists. I will be glad if TAC will try to do that, because still people are refusing to go to the clinic for treatment.

Female, member of TAC, South Africa

Fighting for treatment

The minister of health must stop playing with people’s lives. We are all human beings and I want her to do what is right for health. My question is: why do people who are diabetic not have to fight for their treatment? Why do people who have cancer not have to fight for treatment? But people who are HIV positive must fight so hard, and in this process people are dying. Why? I want the president, Thabo Mbeki, to look after his people and see that Manto [the minister of health] is doing a wrong thing.

Female, member of TAC, South Africa

Leadership and role models

We need our leaders to lead in the eradication of stigma and violence and to come up with positive messages about HIV and AIDS, not negative messages. They should go to the communities and hold meetings, not rely on the radio only, [but] go into the communities, whatever language is being spoken, and use that language. This is not happening at the moment.

And if some of the leaders know that they are living with the virus, they must also come out and say: “I am living with the virus and I am living positively.” People will listen to their leaders and [be open] when they hear their leader say that, because their leader is their role model. Because no leader has come out so they think that none is affected by HIV, but they are affected and they are also living in silence.

Jeni (female), member of ICW, Namibia


Challenging the government is a key theme of the Speaking freely on HIV oral testimony project.


South Africa | Gerald: sharing the burden

South Africa | Jo-Ann: joining the struggle

South Africa | John: a loving family

South Africa | Nomafu: encouraging others

South Africa | Patrick: beauty in equality

South Africa | Sylvia: anger to acceptance

Namibia | CJ: fulfilling our potential

Namibia | Karolina: bringing me peace

Namibia | Jeni: leaving stigma behind

Namibia | Maria: information is essential

Key themes

Introduction to the project

Hopes and visions

Challenging the government

Working with the media

Support through community

Why join… or start a movement?

Living with HIV

Gender dimensions

Identity, culture and context