Building a strong TAC, victories and challenges for the future

No profits before life!

Von Nonkosi Khumalo

The Treatment Action Campaign (TAC) in South Africa has played a crucial role in the country’s AIDS response, and is well known beyond the South African borders as a model of successful advocacy and activism. Since 1998, TAC has held government accountable for health care service delivery, campaigned against official AIDS denialism, challenged the world’s leading pharmaceutical companies to make treatment more affordable and cultivated community leadership on HIV and AIDS.

The Treatment Action Campaign, TAC, was founded on the 10 December 1998, the International Human Rights Day. When TAC was launched, our agenda was to ensure that people living with HIV got access to safe and effective treatment, antiretroviral medicines in particular. These drugs were already available and widely used in developed countries. Sadly, it was not the case in South Africa. Antiretroviral treatment was so expensive that only a few and the rich could afford it. The majority of those living with HIV and in need of treatment were dying because they were too poor to access treatment.

But the problem of lack of access to treatment was not just about the price of drugs in South Africa. It was also about the lack of political leadership, starting from the top with ex-President Thabo Mbeki and the Ministry of Health under the late Minister of Health Dr Manto Tshabalala-Msimang, all the way down to provinces like the Eastern Cape, Mpumalanga and KwaZulu Natal. Consequently, this meant that no treatment plan was implemented until 2004. And there was no ambitious strategic plan until 2007, when the National Strategic Plan, or NSP as it is popularly called, was adopted by the Cabinet. There was almost no access to treatment and there were many unnecessary and avoidable deaths.

Building TAC

TAC has grown into a powerful independent force in South African politics. TAC grew from 15 members in 1998 to 15000 – 17000 at its best between 2000 – 2008. Some people joined because they were HIV-positive and wanted medication, and other people joined because they are socially aware and identify with people living with HIV and AIDS.

Most importantly for many of us in TAC, this organisation became a centre of learning and leading. It became a home where we learned about politics, leadership, democracy, law and social mobilisation. It became more than just about HIV, but also about access to health care and what section 27 of the Constitution means.

We have combined different tactics such as community mobilisation, the South African Constitution and law, education, research and use of the media to achieve our ends. This is why TAC has transformed many of us in ways we never thought would ever be possible.

What built TAC and got the attention of the public was this t-shirt with the words "HIVPOSITIVE" printed boldly in front. The t-shirts were produced in 1999 as a tool to break down the secrecy, shame and stigma that surrounded HIV. HIV-positive and HIV-negative members of the new group began wearing the group's now-famous T-shirts. We need to acknowledge that in this country people are living with HIV and that there is solidarity. TAC has spread the message that people with HIV can be treated and that poor people have a right to health care. Today the t-shirts have become an iconic symbol in South African society, representing the struggle for human rights.

Over the past decade the backbone of our work in TAC has been the treatment literacy programme. The focus of this programme is to teach the science of HIV and HIV treatment in communities across South Africa. The treatment literacy programme allows everyone to understand the science of HIV and how to manage the disease.

Teaching community members about HIV also helps to bridge the gap between doctors and patients. As patients learn, the programme empowers them to understand why they need treatment and why some people experience side effects. People became little doctors of HIV: They knew when what kind of drugs there are, when to start treatment, what kind of side effects there could be. It arms community members with the information they need in order to demand antiretroviral treatment from the public health service. It has changed the perception that ‘AIDS equals DEATH’ into the awareness that although you might have HIV, you can still lead a normal and productive life.

Legal campaigns

We also run workshops on the politics of governance for ourselves. We have to understand how our government works, what are the tools available and what are the priorities of the government are in regard to HIV. This allows us to identify strategies on how to engage with the government. We also had to learn what the provisions of the constitution are. We were told that the South African constitution is one of the best constitutions in the world. Section 27 of the constitution, which is the most important, accords the rights to health for every South African citizen. It says that everyone has the right to have access to health care services, including reproductive health care, to sufficient food and water, and to social security. It also says that the state must take reasonable legislative and other measures, within its available resources, to achieve the progressive realisation of each of these rights and that no one may be refused emergency medical treatment. One of the tools and strategies we used the most was the courts.

An example is the campaign on prevention of mother-to-child-transmission (PMTCT). TAC filed a case against the government asking that the government be ordered to make nevirapine available to pregnant women with HIV who give birth in the public health sector, and to their babies. You cannot say that every citizen has the right to access to sexual and reproductive health and then not to provide mothers with ART in order to prevent the HIV-transmission to the baby. We won the case, and the PMTCT-programme has been rolled out to over 1’600 health facilities. For us, it was an entry point for campaigns for universal access to treatment, using provisions in the constitution for legal battles.

The new National Strategic Plan (NSP) 2012–2016 was launched on 1 December 2012. It is an ambitious scheme, which commits South Africa to the virtual elimination of mother- to-child transmission of HIV. Government aims to provide treatment to at least 80% of those who need it. Furthermore, it aims to halve the rate of new HIV infections by 2016. The NSP contains ambitious targets for dealing with the twin epidemics of HIV and TB, using early screening and testing, contact tracing, and better efforts to keep people on treatment for the required length of time.

Today, approximately 1.5 million people are on antiretroviral (ARV) treatment in South Africa. 2 million more need immediate access to ARVs. Even though the rate of new infections seems to be slowing down, it remains far too high. We must do more to prevent new infections – and this, too, begins with learning about the science of HIV.
We need government to draw on the treatment literacy expertise developed by organisations like TAC, and to use this knowledge to drive the new community health worker programme. We need a larger injection of financial and human resources into our health system and social services. And we need treatment-literate communities so that once and for all we can turn the tide of HIV.

New “old” challenges

In South Africa 73% of people living with HIV are co-infected with TB. TB is an old disease, much older than AIDS and as dangerous, but it neither got as much attention and financial investment. In fact, TB is one of the leading causes of death among people infected with HIV globally. TB co-infections are for people living with HIV a leading cause of death. TB accounts for more than 1.5 million deaths a year globally.

In 2010 there were 7386 confirmed cases of Multidrug-resistant TB (MDR TB) in South Africa and 700 cases of extensively drug-resistant TB (XDR TB). Because XDR TB is resistant to the most potent TB drugs, patients are left with treatment options that are much less effective. XDR TB is of special concern for people with HIV infection or other conditions that can weaken the immune system. These people are more likely to develop TB disease once they are infected, and also have a higher risk of death once they develop TB.

There is very little scientific development and investment in new drugs, diagnostics and technologies generally to deal with an old epidemic. With the current downturn in financial investments, getting proper diagnostics and new drugs remains only a pipedream. Currently the need to tackle TB globally requires an investment of $1.3billion in 2012 and $4.4 billion by 2014, however, through Global Fund, only $362million is available to deal with TB this financial year.

We experience a diminishing political leadership globally on HIV and TB. The focus is shifting to other “major” global issues, such as climate change, economic growth or meltdown, etc.

Diminishing financial resources

The devastating news came in November 2011 that the Global Fund to fight AIDS, Malaria and TB does not have enough money to put any one new on HIV treatment and cancelled Round 11. This effectively means no new grants until 2014. But effects will be devastating in Southern Africa, where millions are still awaiting lifesaving treatment. In some countries such as Swaziland, Mozambique and Zimbabwe, existing national treatment programmes are under threat of being severely curtailed, effectively reversing progress there. There is a Transitional Fund Mechanism put in place to cushion the programmes, but what this effectively does is to maintain what is already there without scaling up.

The U.S. President's Emergency Plan for AIDS Relief (PEPFAR) is scaling back in most countries — focusing on “health systems” instead. The US government in 2011 announced that its slogan will be “Turning the tide of HIV/ AIDS” but this has not held true, especially in South Africa. Despite the promise to scale up, US government is actually cutting PEPFAR funding by 12% in its 2013 budget.

The Global Fund and PEPFAR combined account for 84% of the total HIV response in the developing countries. World Bank Multi-country HIV/AIDS programmes and UNITAIDS Paediatrics and second line ARV programmes are also shutting down or phasing out.

Domestic purses are shrinking and health is compromised. Resources invested in wars rather than in lives..... This crisis in global health could be the clearest example yet of how the world’s most vulnerable are being made to pay for the financial crisis that started in the banks and hedge funds.

Profits matter more than lives

Over the past decade, TAC has campaigned for affordable access to medicines, seeing a nearly 99% drop in the price of a standard triple drug combination, from roughly 9’000 EUR per patient per year in 2000 to below 115 EUR per patient per year today. These prices came down primarily because of market competition among generic drug producers in India. Yet the battle for medicines access is not over, and many medicines, including cancer drugs and newer HIV medicines that people need after time, remain inaccessible to people in the developing world because of their high price.

European governments are pushing to limit our access to medicines through a Free Trade Agreement (FTA) that the EU is negotiating with India, which is the world’s largest producer of affordable generic medicines.

India is often called the ‘pharmacy of the developing world.’ A study found that between 2003 and 2008, India supplied more than 80% of the HIV medicines used for the treatment of people living with HIV in developing countries. Beyond HIV, India is a vital supplier of affordable generic medicines to treat many other diseases.

But all this could change if the EU continues to pressure India to agree to more stringent intellectual property protection than that required by international trade rules. The United Nations, the World Health Organisation, the Global Fund to Fight AIDS, Tuberculosis and Malaria, and UNITAID have all warned against the adoption of these stringent measures that exceed India’s obligations. The adverse impact these excessive intellectual property provisions have on access to medicines is well documented.

The Swiss drug company Novartis took legal action against the government of India and filed for patent protection with the India’s Intellectual Property Appellate Board (IPAB) for a drug called Gleevec – a cancer drug for chronic leukaemia. Section 3(d) of the Indian Patent law states that new patents should not be given for routine improvements of existing medicines (“evergreening”). IPAB rejected the application, and in the meantime Novartis got exclusive marketing rights for Gleevec in India. It was selling it at $2666 per patient per month. Generic companies on the other hand were selling it at $177 per patient.

Should Novartis win the case, patents would be granted far more broadly on life-saving medicines in India, blocking the competition among multiple producers that drives prices down, and restricting access to affordable medicines for millions in India and across the developing world. A Novartis victory will also result in a negative precedent for countries like South Africa. South African law has no provision against evergreening and has issued patents for a number of previously registered medicines, including Gleevec. Civil society organizations such as MSF, TAC and the human rights NGO, SECTION27, are putting pressure on the government to revise existing legislation to include a provision preventing evergreening.

Ensuring that access to HIV medicines is protected is crucial to save lives and also reduce transmission of the virus. Last year, a landmark clinical trial showed that HIV treatment reduces by 96% the risk that the virus will be passed on. It is imperative that medicines remain available and affordable so that we can begin to turn the epidemic around.

Solidarity across boarders

In the Political Declaration on AIDS 2011, world leaders have committed themselves to achieve universal access to HIV prevention, treatment, care and support by 2015. UNAIDS titles its strategy “Getting to Zero: Zero new HIV infections. Zero discrimination. Zero AIDS-related deaths.” I think that this strategy to getting to zero is an honourable principle as it was envisaged, but from the experience and what we see in terms of finances that are being available or not available and the responses of pharmaceutical companies, it will not be feasible to achieve zero principle by 2015. There are lesser resources invested in health and HIV generally. Pharmaceutical industries have started to reinforce the patents so that the new drugs that are most important especially for countries with high HIV epidemic will not be accessible for all. So much “getting to zero” is an honourable principle to get people behind, but I think that the international powers are not playing to the front in the moment and they need to be pushed once more.

My challenge to international donors and international governments would be once more to say that lives of people living with HIV are still important lives. We cannot talk about development without talking about health, and we need to rethink how much money we want to invest in wars and how much we invest in health.

The Swiss government has a huge responsibility that it has not risen to, especially with the fact that all the big international agencies are based in Switzerland. Global Fund was launched in Switzerland in 2002, and the Swiss contribution towards international drive on funding health has been very minimal compared to other countries who have the same GDP and are actually affected by the current Euro crisis.

My conclusion is that the voices of social movements and AIDS movements must be heard again – they have been too quiet for too long. Solidarity across borders North – South becomes vital one more time. We need to push for proper resourcing of the Global Fund, maybe with an expanded mandate on health. Once more shout: No profits before life!

*Nonkosi Khumalo is a mother and an AIDS activist. She currently serves as the Chairperson of TAC. She began her tenure at TAC in 2001 as the organisation’s National Executive Secretary. Shortly after, she served as the National Women’s Health Programmes Coordinator where her focus was on evaluating Mother-to-Child Transmission Programmes, and the availability of Post-Exposure Prophylaxis for rape survivors in public health facilities. In 2004, Nonkosi was promoted to lead TAC’s Treatment Project. She is currently working on the implementation and research of the National Strategic Plan (2007–2011) for the South African National AIDS Council, serving as an Executive Member of the University of Natal for the Movement Against Women Abuse and as a board member of the AIDS Rights Alliance of Southern Africa. Contact:

A timeline of TAC

1998 – The TAC is launched on the steps of Cape Town’s St George’s Cathedral with its first campaign - calling for the provision of the antiretroviral (ARV) Zidovudine (AZT) for pregnant, HIV-positive mothers to prevent mother-to-child HIV transmission (PMTCT). The organization's first statement also urges the government to develop a plan to provide affordable treatment for all HIV-positive South Africans;

1999 March – After starting a petition for the introduction of PMTCT services, TAC members march on one of the country's largest hospitals in Soweto. TAC protesters stage a lie-in at the hospital's gate;

1999 June – Thabo Mbeki is elected president and Manto Tshabalala-Msimang is appointed health minister, ushering in an era of “government-endorsed AIDS denialism”. Later, a Harvard University study will estimate that Mbeki's delay in rolling out ARVs caused the death of 300,000 South Africans in the next five years;

2000 – As the TAC imports the generic version of the antifungal medication, fluconazole, in defiance of pharmaceutical company Pfizer's patent, Médecins Sans Frontières establishes the country's first ARV treatment programme at a primary healthcare clinic in the Cape Town township of Khayelitsha;

2002 – South Africa’s Constitutional Court rules in favour of the TAC, forcing the government to provide the ARV nevirapine to pregnant, HIV-positive mothers to prevent their unborn babies from contracting the virus. Later that year, Hazel Tau lodges a complaint regarding high ARV prices with the national regulatory body, the Competition Commission. She wins this complaint a year later;

2003 – The TAC launches its civil disobedience campaign. Later that year, 21-year-old TAC member Lorna Mlofana is murdered after revealing her HIV-positive status. The man convicted of her murder served a few years in prison before being released;

2004 – Government begins the slow roll-out of ARV treatment;

2006 – The TAC wins a court case that establishes the right of prisoners to treatment. As of July 2011, about 9% of the country's jails have ARV clinics on site;

2008 – Government releases new PMTCT guidelines for administering more effective dual therapy instead of single ARV treatment; Mbeki is recalled from the presidency by the ruling African National Congress and Tshabalala-Msimang is replaced. Later that year, a moratorium on ARV treatment in South Africa’s Free State province commences due to financial mismanagement. The TAC launches protests at a local hospital in the province and parliament;

2008 November - TAC reveals it is experiencing a financial crisis that would force it to retrench 20% of its staff and cut back its treatment literacy programme;

2009 – Jacob Zuma, the new President, signals an end to denialism and announces improved treatment guidelines, long lobbied for by the TAC and partners;

2010 – South Africa has the biggest treatment programme in the world targeting at least one million people.

2011 1 December - President Jacob Zuma unveiled the new National Strategic Plan (NSP) 2012–2016.