The Treatment Action Campaign’s treatment literacy programme has played an important part in the lives of thousands of people as well as in the wider struggle against AIDS denialism and for access to antiretroviral therapy. The programme showed that anyone, irrespective of education or class, can understand the basic science of HIV and the basics of how HIV are treated. As a successful model of patient empowerment TAC’s treatment literacy programme has few, if any, equals.
In this episode of the Spotlight podcast host Nomatter Ndebele chats to Siphiwe Mhlangana, a TAC branch educator from Katlehong North, about what treatment literacy entails and why it still matters so many years into the HIV epidemic.
Episode 10: Siphiwe Mhlangana on the Treatment Action Campaign’s treatment literacy work The Spotlight Podcast
The Treatment Action Campaign’s (TAC) 6th National Congress held in
Sterkfontein, Gauteng concluded today with the re-election of Anele Yawa as General Secretary and the election of Sibongile Tshabalala as Chairperson. Vuyokazi Gonyela was elected as Deputy General Secretary and Patrick Mdletshe was re-elected as Deputy Chairperson.
“The second phase of TAC’s struggle is for quality healthcare delivered through a well-functioning healthcare system where the dignity of all is respected and nobody is excluded,” read a TAC statement. It also said that “In 2017, the HIV and TB epidemics are far from over in South Africa and in many other countries. To bring an end to these epidemics we will require more healthcare workers and properly functioning healthcare systems. We will require a movement that politicises access to healthcare and that refuses to accept that some people can get quality treatment while others cannot”.
The congress, attended by representatives from close to 200 TAC branches from seven of South Africa’s nine provinces, made a long list of resolutions that will guide the organisation’s work over the next three years. Amongst others, the congress resolved to recommit to the empowerment of TAC branches and the reinvigoration of the organisation’s treatment literacy programme. It was also resolved that each of TAC’s branches must adopt a clinic and a school which they should monitor and engage with.
Earlier the congress was addressed by Deputy President of South Africa and chair of the South African National AIDS Council (SANAC) Cyril Ramaphosa. Ramaphosa said that “we must acknowledge that our health system is under great strain and that it is struggling to meet the needs of our people”. He also urged TAC to not to disengage from the SA National AIDS Council. The congress eventually resolved that TAC will remain in SANAC, but that the organisation will leave SANAC should its concerns regarding SANAC governance not be addressed with sufficient urgency and transparency. (Ramaphosa’s speech can be read in full here.)
The congress also earlier heard from Minister of Health Dr Aaron Motsoaledi who presented government’s plans on National Health Insurance. TAC resolved to continue its support of NHI while also raising concerns regarding certain aspects of NHI, such as the exclusion of foreign nationals and the exclusion of civil society from six of the seven recently announced NHI committees. TAC also undertook to assist patients who could not access appropriate treatment and care in the public sector to seek such treatment in the private sector. It was stressed that this would be done in a dignified and non-disruptive way.
The full list of TAC national leaders elected at the congress are as follows:
Chairperson – Sibongile Tshabalala
Deputy Chairperson – Patrick Mdletshe
General Secretary – Anele Yawa
Deputy General Secretary – Vuyokazi Gonyela
PLHIV Sector Representative – Andrew Mosane
Women’s Sector Representative – Thandi Maloka
LGBTQIA+ Sector Representative – Philemon Twala
Youth Sector Representative – Amelia Mfiki
Men’s Sector Representative – Pule Goqo
A full list of congress resolutions is available on the TAC website here.
Note: Spotlight is a joint publication of the Treatment Action Campaign and SECTION27. We have been granted substantial journalistic independence – which we guard jealously.
We have prepared a special print edition of Spotlight to coincide with
the Treatment Action Campaign’s 6th National Congress taking place
from 23 to 25 August 2017. Amongst others it contains updates from all
seven TAC provinces and articles on treatment adherence and the future
of ART – as well as short briefings on the state of the TB response,
the state of SANAC and analysis of South Africa’s National Strategic
Plan for HIV, TB and STIs 2017-2022.
On Friday 31 March 2017 South Africa’s National Strategic Plan (NSP) for HIV, TB an STIs 2017 – 2022 was launched in Mangaung, Free State. However, as of noon on Monday 3 April the final plan has not yet been made public. Most commentary is thus based on almost-final versions of the plan and/or a summary of the plan published by the South African National AIDS Council (SANAC).
At the launch, Deputy President of South Africa and head of the South African National AIDS Council (SANAC), Cyril Ramaphosa, said that “this is a pivotal moment in our fight against the epidemics because, despite our successes, we need to significantly expand and accelerate our efforts.” He said that the new NSP “emphasises the need for leadership participation and accountability at all levels to achieve the 90-90-90 targets.”
“We should, at minimum,” said Ramaphosa, “reach the 90-90-90 targets for HIV and TB by 2020.” He said that “this must be the commitment of government, business, labour and every formation within civil society.”
NSP not endorsed by TAC and SECTION27
On the night of March 30, lobby groups the Treatment Action Campaign (TAC) and SECTION27 released a joint media statement in which they said that they cannot endorse the NSP in its current form. They argued that the NSP falls short in four areas: lack of accountability, human resources, funding, and the NSP’s “weakness” on a number of specific issues – of which they identified access to condoms in schools and the decriminalization of sex work as key examples.
TAC and SECTION27 did however indicate that they would consider endorsing the NSP should certain additional implementation plans be developed and costed. Amongst others, they wish to see an addendum giving detailed guidance to provinces on NSP implementation, an addendum that sets out the additional human resources required to implement the interventions identified in the NSP, and a full costing of the NSP and a realistic assessment of where the needed funds will be found.
The two groups also indicated that they are “deeply concerned” by what they describe as the “ongoing governance crisis at SANAC”. “Serious questions about governance at SANAC remains unanswered despite various letters from TAC and meetings with key individuals,” the statement read. “We are particularly concerned by the lax way in which SANAC has handled conflicts of interest and the process of appointing a new CEO.”
Comment from MSF, RHAP, Sonke and others
Previously, writing on Spotlight, Julia Hill of Medecins Sans Frontieres (MSF) argued that we need to take the NSP to local, community level otherwise we only have a “pie-in-the-sky document” which makes it difficult for communities most affected by HIV and TB to hold to account AIDS Council governance structures and government departments. National success, she says, depends on smaller programmatic successes at district, sub-district, and service provision level. Monitoring and evaluation (M&E) standards must therefore be put in place at these system levels to ensure people are able to access services intended to lead to achievement. In this regard, she argued, the NSP falls short.
Russell Rensburg of The Rural Health Advocacy Project (RHAP), also writing on Spotlight, pointed out that what makes a good plan is a plan that promotes equity and a plan that is informed by the people most affected. “A good plan is a plan that we know will be implemented due to robust accountability mechanisms. These in our view are the Achilles’ heels of the new NSP.”
He cautioned that the reality is that the NSP kicks off at a time when resources for health are diminishing, a weak currency is contributing to significant increases in drug prices, and there is a deepening crisis in human resources because resources are insufficient to meet basic HR needs. The system is close to collapse. He also called for a “strong SANAC that can lead, direct and accelerate the response. Rather damningly, they conclude that, “We fear SANAC in its current state does not meet this muster.”
Ariane Nevin of Sonke Gender Justice and Thulani Ndlovu of Zonk’izizwe Odds Development wrote that the first draft of the NSP, released in November 2016, was cause for some jubilation for prisoners’ rights activists, for the first time including inmates as an HIV key population and incorporating important human rights language and interventions for prisons. However, they celebrated too soon, as two drafts later, following “a far from transparent or inclusive political process”, the prison-focused language has been markedly stripped down. Although inmates remain a key population for both HIV and TB, and recipients of a core package of services targeting key populations, the NSP is missing interventions directed at addressing the causes of the TB and HIV epidemics in prisons: insufficient infection control, non-implementation of the Policy to Prevent Sexual Abuse of Inmates, dismal levels of overcrowding , inadequate ventilation, and insufficient re-integration support or linkage to care for ex-inmates upon release, to list but a few.
Marlise Richter, of Sonke Gender Justice, and Thuli Khozaof and Katlego Rasebitseof the SANAC Sex Work sector, writing in Spotlight, also highlight the “tricky” drafting process of the NSP. They made the case for a much more robust section on the structural factors that impact on sex work. These include a strong call for the decriminalisation of sex work with clear indicators, the elimination of the police practice of ‘Condoms as Evidence’, removing ideology-based funding restrictions and including a migration focus.
Sasha Stevenson of SECTION27 argued that the NSP offers promising statements on human resources for health in general, and community health workers in particular, but that the question is how far the new NSP goes in advancing the discussion around and demand for the development and integration of community health workers as a vital cadre of health care worker for the implementation of the NSP and strengthening of the health care system. The answer, unfortunately, she says, is “not far enough”.
NOTE: Spotlight is published by the TAC and SECTION27 – both of which are mentioned in this article. The editorial team has however been given editorial independence – which we guard jealously.
Mineral-rich, prosperous, the glitter of gold – that’s supposed to be the promise of the towns the sit atop the ore-rich western fringe of Gauteng.
But while mining giants may have cashed in for generations, many more labourers have been casualties of a long legacy of exploitation and shocking workplace practices.
There isn’t a clear sustainability plan for this sunset industry, leaving people who have flocked here in the hope of work and a better life with uncertain futures. Their present realities are still about competing for scarce jobs with few opportunities. They struggle to make ends meet in homes and communities that are underdeveloped, stuttering along with poor infrastructure, from a lack of basic services like piped water, electricity and proper sanitation, to clinics that are overcrowded and understaffed, and hospitals where maintenance and upgrading have not taken place in years.
People before profits
Richard Moloko (43) knows first-hand about the tough life on mines. In 2008 he was working for one of Carltonville’s big gold mines as a machine operator. That year, he was also diagnosed with HIV. It was a shock he says, but what was worse was that starting treatment that year took its toll on his body.
‛I would get dizzy and nauseous sometimes. Because I was working with flammable things on the mines they said I shouldn’t do my job anymore. After some time I was fired,’ says Moloko.
Initially, he thought that he would be offered another job, something that wouldn’t have comprised his or anyone else’s safety. Instead, he was sent home and now, eight years later, Moloko is still unemployed. He lives with his brother in Khutsong, a settlement outside Carltonville.
Moloko is on ARV treatment and gets his medicines from the local clinic, about 4 km from his home. The Welverdiend Clinic is small and cramped and sometimes he waits for hours. But generally there are no problems with stockouts, and that’s a relief, says Moloko. Still, he’s not completely well and he rolls up his sleeves to show a skin condition that won’t heal. He hasn’t been able to see a specialist, nor has the clinic referred his case to other hospitals in the municipality where he could find help.
Moloko’s health issues, though, concern him less than his lack of employment. He’s never been able to challenge his employers for firing him and now, eight years later, the company has changed ownership several times. He doesn’t know where to begin to take on the fight and he doesn’t have the resources to do so.
‛It does make me cross that this happened and that I can’t do anything about it. I accepted my HIV status, my employers should have too. I feel I was discriminated against. I am still discriminated against when I go look for work. But even so, I don’t hide that I am HIV positive. I always disclose, I’m not ashamed,’ he says.
Quiet and desperate on the western front
There’s an odd stillness for a mid-week morning in Extension 5 in Khutsong on the western rim of Gauteng. The blustery spring day has driven people indoors, but even so there are few signs of people stirring among the rows and rows of new RDP houses, as you’d expect in a sprawling location
Most people are away in town about 10 km away, looking for jobs, locals say. Many of the houses stand empty – curtains are drawn and everything is shut and locked. Locals says that the RDP houses are uninhabited because people can’t afford to live so far away from the centre of town, Nor can they maintain the upkeep of their homes, or pay for utilities like electricity bills in the sections of the settlement that has been electrified. People also can’t count on water to run from taps, even in those houses that have piped water.
Local Treatment Action Campaign (TAC) leaders like Tsediso Mokoena and Tshepo Maboe say that, to an outsider, the pastel-coloured RDP houses look like a step in the right direction for development. They acknowledge that efforts to improve the shortage of proper housing is a good thing, but they criticise the authorities for not considering the bigger picture by providing better planning and infrastructure.
‛They now say that this is a dolomite area and there are problems with the water, so people have to rely on Jojo tanks and water tankers for water, and they have to use portable toilets. They haven’t built proper roads here, so people can’t get in and out to town easily; it’s too expensive for many people. It’s like they, the council, didn’t know what they were doing when they developed here,’ says Mokoena.
At the end of July, a sinkhole in the area led to the collapse of the water pipes feeding water to Khutsong Extensions 4, 5 and the Welverdiend area, where the local clinic is located. The ground is confirmed to be unstable and water services remain interrupted, intermittent at best.
Unemployment has also hit hard here, making life much tougher for the likes of Nonzwakazi Mamane (39). She was absorbed into a community works programme launched across Gauteng in 2010. The programme is aimed at providing limited employment to the most vulnerable communities. In Khutsong, the project is to clean up the neighbourhood and tend to community vegetable gardens – with food security being one of the priority focus areas for the programme.
Mamane’s stipend is about R600 a month. It’s too little to survive on, she says, but without it she has nothing. The food gardens that are supposed to help supplement her, her husband and her three children’s diets, are failing because there is no piped water to keep the thirsty plants thriving. The community is also expected to buy its own seeds, fertilisers and gardening implements.
‛They say we are in a dolomite area so they stopped pumping water to us for over four months now. You don’t know when the water will come in the taps, it can be two o’clock in the morning and you’re sleeping then you don’t get water,’ says Mamane.
To water the gardens, the people on the project have to carry what they can in watering cans and buckets from a water tank to the gardens. It’s simply too much labour to be sustainable.
Water is top of mind for Mamane in a season of severe drought that has hit large parts of South Africa. Without water it’s not just that the vegetable gardens can’t grow, but hygienic sanitation is compromised and the risk of illness and disease increases. Already, raw sewage runs down the dust alleys that separate the government houses.
Mamane is worried about getting sick, because it means relying on the nearby clinic. Welverdiend Clinic is 4 km away and she has to catch a taxi to get there. ‛You can wait three hours. Last time I was there they told me I was supposed to have a pap smear, but they didn’t have the equipment to do it. It’s a very small clinic and they don’t have proper rooms, the space is just divided up and there’s no privacy for the patients,’ she says.
It’s a collapse of so many things for the likes of Mamane. ‛I’m going to be turning 40, I have to look after my three children and I can’t find a proper job. I don’t know what to do,’ she says, picking up her filled watering cans and heading home.
A friend in need
An old sewing machine whirrs inside an RDP house in Khutsong Extension 5. Florina Mothabeng (74) is hunched over the machine; she pauses only to hear more clearly what her friend Elizabeth Sholo is saying.
The two friends meet like this most days to pass a few hours of the day. Mothabeng is chirpy and chatty. Her house is one of about 18,000 that were part of a massive housing development launched in 2009 in the municipality. The houses were meant to be built on land that was safe for development and the housing project was meant to introduce an integrated rental model for Khutsong locals.
Mothabeng lives on her own, as does Sholo. It’s difficult for elderly people to look after themselves on their own. While Mothabeng says she’s fine and has little to complain about, she reveals that she’s on a slew of tablets for hypertension. She says she’s mostly satisfied with the service from the mobile clinic, which she can reach quite easily and where they have her medicines every month, she says.
But then she motions with her eyes and a little head nod that the questions about medical care should really be directed at her friend. She doesn’t want to put Sholo on the spot but she knows Sholo deserves better care and is not getting it.
Sholo obliges by lifting up a bandaged hand. She removes the wad of gauze and bandage to reveal a hand that’s badly deformed and scarred. This is an old injury from 2009, when Sholo was caught in a shack fire. They hand is all by useless. It still hurts, says Sholo.
At the time of the fire she was treated at the Leratong Hospital in Mogale City but her burns turned septic. Still, Sholo was sent home and had to learn to adjust to living with a damaged hand that still causes her pain.
At home, Sholo has to look after herself. The adult child she used to live with was killed in a car accident some years ago. Both grannies live alone and Mothabeng jokes that her children only visit to borrow the Tupperware she has in neat stacked tiers on her kitchen cabinet. She quips that if she had DStv then her grandchildren would also come visit her.
Jokes aside Mothabeng worries for her friend, who can’t remember exactly how old she is and also has failing eyesight. Sholo seems resigned to this existence and just asks for some help to wind the length of bandage back around her hand.
‛My heart is sore to see her like this,’ says Mothabeng.
A step too far
It’s been more than 18 months since Sibongile Kratshi (40) has been to a clinic or hospital. She’s HIV positive and is on ARVs. Kratshi knows she needs to have a blood test and to see a doctor, but it’s too painful to walk, to make the journey.
Kratshi was diagnosed with HIV in 2009. Since then, she’s suffered a stroke that has affected her speech and her movement. Her feet are constantly swollen and it hurts for her to shuffle to open a door that’s just a few paces from the sofa where Kratshi spends most of her day. She says she can hardly leave the house, her disability has become so bad. A small radio plays all day to keep her company.
Kratshi has previously been told she needs to see a physiotherapist to help improve her mobility. Such help could help her to get crutches or a wheelchair and the necessary medical approval to apply for a disability grant. But she’s physically unable to get anywhere, and only has her 14-year-old son to assist her.
The teenager picks up his mother’s ARVs every month and every time he brings back the same message: that the nurses need her to come in for tests. Neither they nor she know what her current CD4 count is.
It doesn’t help that Kratshi also loathes clinic visits. She says of the local Welverdiend Clinic: ‛I don’t like to go to the clinic; the nurses treat me badly and there is no privacy there.’ Her speech has been affected by the stroke and she dreads coming across an impatient nurse who will be rude and disrespectful as she struggles to make herself understood.
Even though there is a mobile clinic that services greater Khusong area once a month, Kratshi says she will not make it the few hundred metres without considerable pain. Even if she could, the mobile clinic services will not be able to draw blood or give her results.
Instead, she falls back into the sofa, turns up the radio and waits for her son to come home from school.
A message for a better future
The baby Beauty Modise is balancing on her hip won’t stop crying – the 16-month-old wants her mother’s full attention.
Modise is 24 and this is her second child. She was a mother at 19 with her first child. Unmarried and with two children before the age of 25, this wasn’t the future she imagined for herself when she was a West Rand schoolgirl.
‛I wish that I was told good information growing up. People would say things to me like, ‟Don’t go around with boys” but they didn’t say, ‟Unprotected sex can make you pregnant,”’ says Modise, who is now a volunteer with the organisation SRHR (Sexual Reproduction Health Rights).
The organisation is a coalition between the TAC and Youth Friendly Services (YFS). Its primary aim is to raise awareness about sexual health and rights for young people. They speak at schools and also campaign door-to-door.
‛It helps that we are also young people speaking to other young people. For me, the message I want to give them is that they mustn’t make the same mistakes that I made.
‛It’s not easy to be a mother when you are so young. I never went to study because there is no one else to look after my babies and today I am unemployed. The father of my children is 25 and he is also unemployed. We survive only on piece jobs and that is very hard,’ says Modise.
Currently, there are 10 SRHR volunteers for the Leratong municipal district, both men and young women. Modise says having volunteers who are young and are both male and female means they have a better reach and a better chance to reach their target audience.
She says she’s committed to working with the NGO, helping the youth in her community, saying no young person should have the same pressure she has had just as they’re about to start their adult lives.
‛I want to say to school kids, stay in school, work hard for a better education and a better future, don’t be like me,’ she says.
*Speech delivered by Nkhensani Mavasa, Chairperson of the Treatment Action Campaign (TAC), at the opening of the 21st International AIDS Conference on 18 July 2016*
Deputy President, Minister of Health, Premier of Kwazulu-Natal, MECs for health, foreign dignitaries, leaders of the global AIDS response, people living with HIV, friends, comrades. It is a privilege to address you on this historic day.
We are here 16 years after a young boy with HIV named Nkosi Johnson addressed this same conference. He was ignored by our political leaders then. We know he would not be ignored today.
We are here 16 years after the Durban Declaration said ‘NO’ to the madness of AIDS denialism.
16 years after many of us marched on the streets outside this building demanding access to ARV treatment and the start of PMTCT programmes in developing countries.
Our marches then helped save 15 million lives. After we marched, the world woke up to the political crisis of AIDS. It started to act.
If activists had not marched then I would have been denied treatment.
I would be one of your statistics.
My name is Nkensani Mavasa. I am 38 years old and living with HIV. I am the chairperson of the Treatment Action Campaign. We are a movement of 5,000 poor people in South Africa. Most of us are women. Most have HIV.
I come from Giyani, a rural town in Limpopo province where access to health services is still a challenge. Where I live, we have to travel far to clinics. When we get there, often there are too few healthcare workers. Often people wait for many hours and then have to go home without medication or even seeing a healthcare worker. The reality is that this has not changed much in the last sixteen years.
Friends, we learnt last year that all people living with HIV must have access to anti-retroviral treatment. That knowledge is so important – but it is like starting all over again. Once more we have a huge challenge: 20 million more people on treatment *as soon as possible*.
We know that today there are 17 million people on treatment. After many years of activism, billions in donor dollars, through the efforts of hundreds of thousands of healthcare workers we have achieved 17 million.
But another 20 million people still need treatment … and many of those people live in places like Giyani.
The main task before all of us gathered here is to ensure that an additional 20 million people can access treatment – and not just treatment, but also all the health care and counselling that is our human right and must go with it.
*We NOW need a road-map to treatment for all* – not just talk – a ROAD MAP that is backed up with the money and political will to make it a reality. In South Africa we have a 5 year National Strategic Plan. For the world we need an International Strategic Plan. Do you agree?
It is possible to treat everyone and prevent every possible infection. But to do so we must be honest with ourselves and we must be serious. I will briefly mention three MAJOR obstacles on the road to treatment for all.
Firstly, to bring treatment and care to an additional 20 million people we will need healthcare workers.
Where possible we will need to shift tasks to properly, supervised and paid trained community healthcare workers and lay councillors. We need a global plan for this now. We cannot leave it to chance because we know chance does not deliver.
Do you think we can have strong healthcare systems without people?
If we agree, why is it that here in South Africa committed community healthcare workers and lay councillors are losing their jobs?
Where I live in Giyani, people are defaulting because there are no healthcare workers to help them stay on treatment.
And healthcare workers who do have jobs are overworked and struggling to keep their heads above water.
How will we we ever reach the 90-90-90 targets without thousands more healthcare workers?
Secondly, we can’t bring treatment to an additional 20 million people if our healthcare systems are mismanaged and rife with corruption.
This is a problem across the world – not just here in South Africa.
Too often, at conferences like these, we focus on the technical side of fixing healthcare systems, but turn a blind eye to the political problems.
Let me elaborate on one example here in South Africa …
A man facing multiple serious charges of fraud and corruption is in charge of the collapsing public healthcare system in the Free State province. The Free State has a population of three million people. HIV prevalence is 14%. Life expectancy is the lowest of all SA’s Provinces.
This man has victimised community healthcare workers and whistle-blowers. On his watch the Free State lost a quarter of its public sector doctors last year.
This person’s name is MEC Benny Malakoane.
We cannot reach 90-90-90 if we turn a blind-eye to the Benny Malakoane’s of the world.
Thirdly, we will not bring ARV treatment to an additional 20 million people if we allow our political leaders to continue to be complacent about HIV.
Worse than that, in too many countries political leaders are clamping down on civil society organisations that fight HIV. We are not the enemy. The enemy is complacency and corruption.
We cannot continue to speak of an ‘end to AIDS’ when
less than half of people who need treatment have access to treatment;
when new infections are rising in parts of the world;
when over one million people still die of AIDS and TB every year;
when civil society organisations are being intimidated.
That is the old AIDS we know. It’s not going away without a big fight.
Yes, we have made massive progress. Thank you Mr Sidibe. Thank you Deborah Birx. Thank you Minister Motsoaledi. But it’s not been half enough. We ask UNAIDS and others to stop spreading complacency by talking about an ‘end to AIDS’.
Our lives are not an advertising campaign.
Friends, we must demand action from world leaders based on the facts … and the most important fact is that 20 million people need treatment right now.
Let us also not beat around the bush about political priorities. The United States spends $600 billion on defence every year. That, while the Global Fund struggles to raise not even $30 billion.That, while the world invests less than $0.7 billion on TB research per year.
This is a disgrace.
HIV and TB is still a crisis in our communities. We must make it a crisis for our elected representatives.
We have rights. We must demand better.
Friends, comrades, when your house is burning with your family inside it you don’t quietly ask for help.
You beg. You scream and shout. You demand.
Our house is still burning.
President Obama, Chancellor Angela Merkel, President Xi Jinping, President Zuma
I was just months away from knowing my own HIV status when, in the year 2000, the people took over the streets of Durban marking a revolution to come. Although I was not present in Durban for that year’s AIDS conference – I was already connected to the struggle.
This year I will be attending the 2016 AIDS conference. As I reflect on the last decade and a half, I wonder that if Durban was a person, what would I tell her?
I would tell Durban that after we left you we continued on a difficult path, one which many of us never thought would happen post-apartheid. I remember the year 2004, for which I have no reason to remind myself or you, but I will; because so many have forgotten what it used to be like to march next to someone and then in a few months they are bedridden and dying.
Twelve years ago Francoise Louis, an Médecins Sans Frontières (Doctor without Borders) doctor, called me Ntombi yam, not her “patient”, and I called her Magogo, not “doctor”. Then, this family grew as other comrades and brothers such as Gilles Van Cutsem, Eric Goemaere and Shaheed Mathee became my lifetime comrades and doctors. Today, I am seen by my nurses sister Nompumelelo Mantangana and sister Lindiwe Kotelana. We have become family. I didn’t know any of these hard working health activists before April 2001.
I remember Kebareng Moeketsi, Mandisa Magugwana, Zoliswa Magwentshu, Nomfundo Somana, Queen Qhiza, Vuyani Jacobs, Johanna Ncala, Mike Matyeni, Ronald Low, Jason Wassenaar and many of my comrades. I wish they were here to reflect with me.
I remember Edward Mabunda, who danced and sang in our national march called “Save our Lives” in 2003, not knowing he won’t be around like me to write a reflection to you in 2016. After the treatment march, we had to nurse comrade Nkosinathi, our branch organiser. His ill-health made me confront and visualise my own death. The deterioration in his health made me realise that death was no longer a distant matter, but that it was at my doorstep. I felt rage from fear of death and I felt anger at the moral bankruptcy of our government. Nkosinathi always had a smile. If only our leaders were not so busy with ideological debates, comrade Nko would be writing this reflection with me.
The pills I take twice a day are a reminder of how leaders can sell their people out – how they can commit genocide and go unpunished. It is a reminder of how building poor people’s power is the only weapon we have against the abuse of political power. The pills are a beautiful memory as well as a painful one.
One would have thought that we learn from the past not to repeat our mistakes. Yet, much as the lives of people living with HIV were disregarded under Mbeki’s leadership, poor people’s lives are still disregarded. the daily war on women’s bodies is still not being taken seriously by our leaders. The Marikana Massacre is only the tip of an iceberg. Between Durban 2000 and Durban 2016 our politics have become that of control, domination and NGO institutionalisation.
But, even as I reflect about my journey and my current life within the geographical and spatial segregations of Cape Town I take pride in still taking the same pills Francoise gave me on the 14th June 2004 (AZT, 3TC and NVP). These pills were fought for with blood and life. For 12 years my viral load has been undetectable. The progress is undeniable. Even so, I feel dislocated at times. My mental health is not seen by the healthcare system to be as important as my viral load. Too often I see old comrades who have been on treatment for years, relapsing.
As much as my life and the country has changed in the last 16 years, much has remained the same or gotten worse. I am still expected by the health system to fetch my treatment every two to three months – and if you go too late you are classified as a defaulter. I am lucky to have a village of support from Nombasa Krune Dumile, Sis Mpumi, Norute Nobola, Yandisa Dubula, Fanelwa Gwashu, Mandla Majola, and Lindiwe Kotelana – somehow someone is always there to pick up my medication.
Every night my nine-year-old daughter Nina reminds me that “ndikuphathele amanzi mama” (should I bring you water mom or have you taken your pills?). My three-year-old son Azania also feels compelled to help me with swallowing them by asking “mama khandiqhekezele ndiyakucela” (can you please give me a piece)? There are days when I take the six pills without even thinking what they are for – because HIV is not always present in my thoughts.
Twelve years ago I could name many people who lived openly with HIV – not because they wanted attention, but because people like me needed to know we are not alone. Today we hardly know – it’s the same old faces who are now in their late thirties or fourties. We barely talk openly. We are not visible enough to those who just learnt their status.
The world of HIV is moving very fast – we are now talking about controlling the epidemic and ending AIDS by 2030. But I wonder. Our public healthcare system remains the same – it is weak and falling apart. How will we end AIDS? Where is the long promised National Health Insurance? If the space for civil society and funding for civil society is shrinking, who will control AIDS? If NGO’s and social movements are not building from below who will end AIDS? If corruption becomes normalised who will hold those looting from the state accountable?
This is no longer Mbeki’s or apartheid’s fault but the fault of our current government. They too must account for their own misdeeds. Honest introspection, debate and action is urgently needed. I hope this will happen in Durban.
This year, I celebrate 15 years of knowing that the HIV test I took in 2001 was not a crazy idea – thanks to Nomandla Yako’s counselling and treatment literacy education that changed my life when I first walked into Ubuntu clinic. Without that strong initial contact I would have been a lost soul. Finding comfort and power in my comrades, sisters and brothers arms Nomfundo Dubula, Nonkosi Khumalo, Sipho Mthathi, Linda Mafu, Rukia Cornelius, Zackie Achmat, Mark Heywood, Noloyiso Ntamehlo and many more. Finding and joining the Treatment Action Campaign was the best thing I have ever done. The people I have walked this journey with will always hold the highest place in the revolution house. They know who they are. I thank you all.
Vuyiseka Dubula is the former General Secretary of the Treatment Action Campaign and a member of the Board.
Ten years ago, the International AIDS Conference was held in Durban in KwaZulu-Natal. Nkosi Johnson, who died a year later at the age of 12 – the longest-surviving HIV-positive born child at the time – addressed the plenary and made a plea to the government to make antiretroviral treatment available to pregnant women with HIV.
At the time, former President Thabo Mbeki pressed on with a campaign of denialism, claiming that there was so such things as AIDS. Thousands of people lost their lives because they were not given life-saving medication.
In July this year, the International AIDS Conference heads back to Durban. Thankfully it is a different time.
Today, KwaZulu-Natal has the biggest antiretroviral programme in the country. Of the 1.8 million people diagnosed to HIV, 1.1 million have access to life-saving drugs. Once one of the worst provinces of South Africa in terms of its response to HIV, KZN has now become the model for a functional HIV-response system. The province has become the poster child for tireless work to bring about change.
Despite this, poor administrative processes and human resource shortages continue to undermine efforts to bring the HIV/AIDS epidemic to an end. Like the rest of the country, the crisis in the public health care system cannot be ignored.
The Treatment Action Campaign has worked tirelessly, particularly in the province, to try to ensure that the most vulnerable people’s needs are put at the forefront of the HIV/AIDS fight. Despite the great strides they have made, the TAC is still wary of the difficult terrain in which they have to work.
Patrick Mdletshe, deputy chair of the TAC said: “KZN Cannot afford complacency, the war on HIV is far from being over. KZN is not immune to problems that are seen and experienced by other provinces like the shortage of essential medicine, high numbers of patients lost to follow up processes exasperating the steady growth of defaulters. Therefore we cannot pretend that its business as usual.”
Mark Heywood, executive director of SECTION27, a public interest law centre, says: “There are many tangible manifestations of the crisis that we see every day: HR shortages, drug shortages, dirt, disease, corruption and so on. But my concern is the overall inertia, paralysis, decay, demoralisation and lack of will. It’s on a downward slide in many areas. We see best practices and possibility, we have the resources and knowledge to turn it round, but we lack the conviction to do so.”
Human resources are a major concern for Mdletshe as well, “We understand that without community health care workers (CCG’s) health care system won’t able to keep up with the number of people on treatment as we move to test and treat. we will see more number of people that will default on treatment, next thing people may die while on treatment. It one thing to be on treatment but also is another to adhere on treatment. right now we want people to adhere on treatment and be viral suppress which that is an ultimate goal, otherwise having so many people on treatment will be just meaningless,” he said.
Furthermore, political squabbles within the province also impact negatively on the work done by Civil society.
“All these political issues could potentially undo all the work we have done as civil society,” said Mdletshe.
Although KZN has progressed far down the road in its HIV mission, there is still a lot of work to be done and complacency is a real danger.
This upcoming conference needs to be more than just a formality. It needs, says Heywood, to be “an earthquake that shakes up the complacency and rhetoric around the HIV response”. It needs to find consensus on the priority areas for sustaining and expanding the AIDS response, and to create a new momentum and belief in the possibility of truly overcoming AIDS.
“In other words,” says Heywood, “a repeat of the 2000 conference, but in a very different context.”
Activist Mary-Jane Matsolo last year heard “saddening and horrific” stories from the more than 50 people who testified during the People’s Commission of Inquiry into the Free State Healthcare System. She recently entered the field to assess whether anything had changed. These are her notes.
First stop: Free State Psychiatric Hospital in Bloemfontein
I feel like I’ve been teleported into a scene from the X-files: the openness of the space – a huge, unoccupied, neglected piece of land, deserted buildings, dry, brown grass growing long all over the place. Not a single patient or staff member in sight. The only sign of life is the odd security guard.
After the sixth circuit around the premises I’m convinced I’ve entered the twilight zone. I begin to imagine patients chained to their beds inside these empty buildings and I think about all those people we’ve reached out to for information about the health care system, but who felt shackled by intimidation and refused to speak to us. This province is far from free, as its name implies.
There are spooky looking houses here. Not patient wards: stand-alone houses in which, perhaps, doctors or matrons once lived. They’re creepy. It feels as though, like in a horror movie, faces might appear at the windows.
Next stop: Reitz
About four hours’ drive from Bloemfontein, we found a community caught in nostalgic memories of days gone by when they once had a fully functional hospital.
Then abruptly, about 12 years ago, Nketoana Hospital was reduced to only two functions: the casualty unit and a partially functioning maternity unit. The residents still don’t understand the reasons why their beloved local hospital had its heart ripped out.
Now they have to travel to Bethlehem, about 55km away, only to be met by hostile nurses who, they say, discriminate against them by attending to them last and constantly asking them why they use they don’t use their own hospital in Reitz.
Then on to Nketoana Hospital
It was the next obvious and logical thing for us to do now: Nketoana Hospital. What we saw was extremely confusing. Here was a well-maintained, fully equipped hospital. It seemed set to be able to run like a well-oiled machine and yet most of it was simply shut down.
Stepping into the theatre was like stumbling across the spot, on X-Files, where aliens are operated on – a place kept secret and which is only known about in files stamped “Top Secret” in some government official’s office somewhere. Equipment stood around collecting dust. It looked as though the hospital had been evacuated suddenly. Some wards have been turned into storage rooms: hospital beds lie unused on top of one another.
Qwaqwa was next
There’s been no water here since February. The drought has hit hard. We’re 93km from Bethlehem and our guesthouse has no water. How do hospitals and clinics function without water?
We were looking forward to hearing some of the wonderfully creative ways nurses and doctors were getting around this huge hurdle – caused by mother nature and not the provincial government this time – in their daily work.
We set out enthusiastically, eager to report on the innovations we were sure the staff would have come up with, but at the first clinic, the manager treated us with undisguised hostility, shutting us down and refusing to give us any information.
She referred us to the district clinic manager. The more we tried to explain our interest in how a facility was run without water, the more anxious she seemed to get. She got up, escorted us out of her office and watched us suspiciously. She even followed us to the bathroom when we needed to use the toilet and accused us of inspecting her facility.
She followed us to reception, obsessing that we sign the visitors’ register, and interrogating us about who we were and where we came from, even though we’d offered this information to her when we had introduced ourselves in her office.
We visited the district manager. We sat in her office for what felt like eternity while she refused to acknowledge our presence. Finally she spoke not to us, but down at us. It felt like we were in the principal’s office for bad behaviour. She gave us a firm lesson on having to make an appointment and about procedures that needed to be followed when seeking to talk to staff at clinics. We were told to consult Bophelo House – where the provincial health department is located in Bloemfontein – to gain a letter permitting us access to the clinics before coming to the facilities.
It was clear we were not going to get any information from these women. There was no getting through to them. It was as though they had been completely brainwashed.
The cloak-and-dagger theme, the mystery and spookiness, was carried right through to the staff.
The good nurses – the one who are tired of what things were like and desperate for change that would benefit their patients – were like “un-turned humans”: forthright and open. The “turned humans” were the nurses completely wrapped up in tight bureaucratic secrecy. They seemed to have lost sight entirely of why they became nurses in the first place.
As my travelling companion and I returned to the car, I said: “The not-so-free Free State.” A complete stranger hooked on to our conversation, asking who we were and what we were doing there.
Is this some sort of government agent? Is someone following us now?
The paranoia is infectious.
Mary Jane Matsolo is a Campaign officer for Treatment Action Campaign