Q&A: Campaigning for fairer HIV treatment access in South Africa
Treatment Action Campaign’s Sibongile Tshabalala talks about public health activism and holding governments to account when the drugs cost too much.
Avert spoke to Treatment Action Campaign's (TAC) chairperson, Sibongile Tshabalala, about what can be learned from South Africa's countrywide antiretroviral treatment roll-out and the challenges that still remain for people living with HIV.
How did you come to work for Treatment Action Campaign (TAC)?
ST: I was diagnosed with HIV in 2000, but it was another six years before I was able to access any treatment from the public sector. Antiretroviral treatment was practically non-existent in South Africa at the time – it was too expensive for poorer people.
The cost, coupled with a lack of support from Thabo Mbeki’s denialist government at the time, made me feel that something must be done to protect the rights of people living with HIV.
I joined TAC in 2009 because I wanted to know more about the condition I was living with, the science of HIV, and more about treatments. In the end, I'd asked my own healthcare centre so many questions that the nurse had to refer me away to the TAC group! I've been an advocate for treatment access ever since.
How has the nationalisation of antiretroviral treatment changed the landscape of HIV services in South Africa?
ST: Before nationalisation, those living with HIV who were able to afford medication were fine and healthy, those who were poor were visibly ill. Without affordable access to treatment you could see that there were many people who had developed AIDS-related illnesses.
Now, the disparity of health between rich and poor is smaller. Now we have moved to 'test and treat', ART is beginning to be treated as a prevention method - where people living with HIV have less chance of passing on the virus to their partners. Although there is still a lot of stigma, the normalisation of treatment is helping people talk differently about HIV.
What responsibility do governments have in making sure pharmaceutical companies are restricted from monopolising drug costs?
ST: It is each and every government's responsibility to take care of its people - irrespective of whether or not they are living with HIV and certainly irrespective of the price of drugs. If the price of treatment is high then it should be the government's job to negotiate these costs with pharmaceutical companies so that their people can be given a lifeline.
It's wrong for governments to try to take a back seat or to opt for distributing less effective medications just because they might be cheaper. For example, TAC are now been pushing for the roll-out of dolutegravir. Although it is more expensive than more common treatments (such as tenofovir) it has far fewer side effects, a better drug resistance profile and could help improve the lives of many people living with HIV.
Our constitution in South Africa says that its people, all of its people, should have the right to life and adequate healthcare. What's more, the constitution also says that it's the government who should make health resources available to its people. With TAC, we’re continuing to use our own constitution to argue the case for reasonable treatment costs to the government – as we should all be equal in the face of the law.
What treatment challenges remain and where next for treatment services in South Africa?
ST: Despite the fact that so many people are accessing ARVs in South Africa now, it's quite common for people to default on treatment or not adhere to the drugs they’ve been given.
These challenges are exacerbated by some local pastors and churches who continue to suggest people don't need to take ARVs regularly. This kind of disruption causes people to default on treatment – so we must be clearer in our public health messages about the importance of consistent treatment.
What’s more, while our country has become much better at treating the physical side of HIV, it’s now becoming clear that we need to do more to support people living with HIV who have developed poor mental health. Depression is common and it needs to be taken seriously.
Some people are finding that they are getting depressive symptoms from the treatment they've been given, and so choose to default on treatment instead because their mental health is not being supported. We need to up our game when it comes to learning more about the relationship between HIV and mental health.
Sibongile Tshabalala is Chairperson of Treatment Action Campaign. Founded in 1998, TAC continues to work on access to affordable medication, to represent users of the public healthcare system in South Africa, and to campaign and litigate on critical issues related to the quality of and access to healthcare.
If you would like to support TAC, please visit their website where you can make a donation or work to support their campaigns from overseas.