Dying for treatment
TAC Briefing Document on the Civil Disobedience campaign
This Briefing document is intended to help TAC activists and supporters to understand the background to TAC's decision to embark on a civil disobedience campaign in March 2003. Hundreds of pages could be written about TAC's efforts to persuade government to work with civil society on an HIV/AIDS treatment programme - but this is just a summary. In addition, although there is a great deal of independent research and information that could be cited to support TAC's demands, in this document we refer only to government's own research and policy statements to show how, in reality, the reluctance to commit to a treatment plan, including antiretroviral (ARV) medicines, contradicts its own findings, policies and constitutional duties.
1. What are TAC's two main demands?
1. That government make an irreversible and unequivocal commitment to a public sector ARV programme.
2. That government return to the negotiations at Nedlac and make a commitment to signing a
Framework Agreement with business, labour and community on a National HIV/AIDS Prevention and Treatment Plan.
2. What is the background to TAC's Civil Disobedience campaign?
2.1 Why we are calling for a National Treatment Plan?
The HIV/AIDS epidemic is a crisis that threatens South Africa's reconstruction and development. Up to five million people are infected with HIV and AIDS is now killing approximately 600 people every day.
In late 2002 an investigation by Statistics SA, titled Causes of Death in SA, 1997-2001 found that:
"throughout the study period, the emergence of HIV, TB and influenza and pneumonia as the main causes of death is observed. ... female South Africans in the age category 15-39 died primarily as a result of HIV infections. The data show a unique racial topology of mortality in the registered deaths."
Dealing effectively with a crisis of this scale requires a recognition that HIV/AIDS is an emergency as Cosatu, the religious sector, business and the international community has demanded. It requires mobilization of all of society and a plan to save lives.
South Africa has a five-year HIV/AIDS and STDs Strategic plan, which was adopted in 2000. TAC is not calling for this plan to be scrapped, or replaced. We are calling for a National Treatment and Prevention Plan to strengthen the Strategic plan, which says very little about treatment generally and nothing about anti-retroviral treatment. We are calling for firm targets and timeframes and for all sectors of society to take responsibility for meeting those targets.
This is why TAC and COSATU supported by more than 500 organisations including FEDUSA and NACTU decided to take our call for a National Treatment Plan to Nedlac. Nedlac is a statutory body that has a responsibility to create a forum for negotiation and agreement between labour, business, community and government on issues to do with labour, the economy and development. Among its functions are:
"seek to reach consensus and conclude agreements on matters pertaining to social and economic policy." And
"to encourage and promote formulation of co-ordinated policy on social and economic matters."
HIV/AIDS is an epidemic, disproportionately affecting the labour market and the poor. It clearly has a major impact on social policy.
Between October and November 2002 a senior HIV/AIDS task team at Nedlac jointly developed and negotiated a 'Framework Agreement for a National HIV/AIDS Prevention and Treatment Plan.' In this document there are major areas of agreement.
Originally the aim was to sign the agreement by December 1st 2002, World AIDS day. However, government and business requested additional time. Business has now completed its consultation and supported the document. To date, however, government has not returned to Nedlac. Instead it has used the media to try to discredit and misrepresent the process.
TAC does not agree that it is forcing the government to make 'policy choices' at Nedlac. We do believe that the government has a Constitutional duty to act and take effective measures against this epidemic. This is because it must "respect, protect, promote and fulfill" all people's rights to equality, dignity, and life. This can be done by improving access to health services in general, and HIV/AIDS treatment in particular.
2.2 Why is TAC demanding an ARV programme?
TAC has been accused of being only interested in anti-retrovirals. This is not true. The Nedlac Framework Agreement, for example, deals with many interventions that must be improved. But for those people with HIV who are dying ARVs are an absolute and urgent necessity.
In considering TAC's demand for an ARV programme the following points need to be borne in mind:
¥ Anti-retroviral drugs, including generics are registered by the Medicines Control Council. This means, like all other medicines, they have been approved for use in SA and are considered safe and effective.
¥ In 2002 the World Health Organisation (WHO) strongly recommended the scaling up of ARV programmes in poor countries, so that people with AIDS in Third World countries could have the same benefits from medicine as people in Europe and America. Many countries with less resources that SA have heeded this call, including Botswana and Namibia.
¥ In South Africa several conferences organised by the Department of Health have recommended that there should be ARV treatment. The National Health Summit, in November 2001, called for pilot projects on ARVs. The draft report from the National Scientific Consultative Forum on HIV/AIDS in August 2002 stated:
"As far as anti-retroviral therapy is concerned, there was complete consensus that anti-retroviral programmes are efficacious, and therefore carry the potential to keep many people with HIV alive for many more years than would be possible otherwise. .. unanimous on the need for the DOH to develop a more pro-active plan for the implementation of ARV programmes."
¥ Most importantly the Cabinet Statement of April 17th 2002, recognised that anti-retrovirals work when used according to internationally accepted protocols.
TAC believes that the delay by government in acting on its own policies and recommendations is leading to immense suffering and loss. It is also creating new inequalities in SA. MPs have access to ARVs. People with medical aid have access to ARVs. Parastatals such as Transnet and Eskom provide employees with ARVs. The SANDF is designing an ARV programme. It is only the poor, those employed in the informal sector and small and medium sized enterprises, and the unemployed - ie those who are totally dependent on the public health service - who, as a matter of policy are denied these medicines.
The government has said that we must wait until April or May, when the report of an investigation into the costs of an ARV programme is complete, before a decision is made. TAC disagrees with this. TAC says a policy decision and commitment must be made now.
3. The history of TAC's discussions with government, particularly the Deputy President;
The TAC has been accused of being anti-government. This is not true. The TAC supports this government, and its agenda to reconstruct and develop SA, to eradicate poverty and create equality. It is because we support this agenda that we demand an end to political denial about HIV. Our demonstrations, petitions, court cases etc are all an affirmation of the rights we won under our new Constitution.
TAC was founded in December 1998. From that moment on we have led the march for access to treatment, including ARVs, for people with AIDS. Our first march to Parliament to call for a National Treatment plan was in 2000. Since then Memos have been written and marches organized that have repeated the call for a National Treatment Plan. The last was our march on Feb 14th 2003 of 20,000 people.
But in addition to demonstrating we have made many other efforts to assist government to overcome the barriers to treatment. These have included:
¥ Our intervention in the PMA case, which led to the pharmaceutical companies withdrawing;
¥ Our campaign against Pfizer which led to to the multi-million Rand Diflucan donation to the SA government;
¥ The research we have commissioned into the costs and impacts of treatment;
¥ Our complaint to the Competition Commission regarding excessive pricing by pharmaceuticals companies;
¥ The community based 'treatment literacy' programmes we run to improve knowledge of HIV.
This contribution was recognised by the Deputy President, Jacob Zuma, when TAC met with him in October 2002. The Deputy President agreed the Nedlac process was important, but said that the government may need until February 2003 to sign any agreement. "However, both parties recognized the need for urgency based on the impact of the disease and the suffering and death in communities."
The Nedlac negotiations went extremely well and consensus was reached within the HIV/AIDS task team on most areas of the Framework Agreement, including the principles and challenges of ARV access. Unfortunately though the Nedlac process has now been de-railed by political opposition. From the optimism of the negotiations we now feel that we are back in a dark and difficult situation - once gain charcterised by political denial about HIV. President Mbeki's refusal to recognize gravity of the HIV epidemic in his State of the Nation address seems to be proof of this.
4. Why did TAC and COSATU organize the 'Stand up for Our Lives' march at the opening of Parliament on February 14th?
The agreement with Deputy President Jacob Zuma did not include a promise by TAC to cease social mobilization for its demands, although TAC did decide not to proceed with its threatened civil disobedience campaign. It was in this spirit that the TAC NEC decided to organise a "Stand Up for Our Lives" march on the opening day of Parliament 2003.
The purpose of this march was to link the year's most important political event with one of the country's most important social challenges, HIV/AIDS, and to demonstrate to our MPs the strength of feelings that exist behind calls for treatment and a treatment plan.
The march turned out to be the largest march in the history of the AIDS epidemic, not only in South Africa but in any developing country. It involved people of all races and classes as well as all faiths; it was led by people living with HIV and AIDS; it included 650 delegates who traveled on a train from Johannesburg. The demonstration was disciplined and peaceful and, as we said repeatedly, it was not an anti-government demonstration but a demonstration to show government what could be mobilized with TAC support to prevent and treat HIV.
A memorandum was handed over to government representatives from the Presidency, Deputy Presidency, Health Portfolio Committee and Finance Committee. The memorandum was respectful and requested a response by the end of February to its demands. Those who received the memorandum publicly stated that it would be given serious consideration. But, to date, there has not been any response from the government.
5. What is meant by civil disobedience?
For the most part, the TAC is committed to lawful protest. Our short history bears testimony to this.
We wish to state clearly: the TAC civil disobedience campaign is not promoting ungovernability. It is not promoting gratuitous law-breaking. It is not calling for the overthrow of the government!
The aim of the campaign is to demonstrate anger and compel our political leaders to deal with our demands. For millions of people AIDS is a personal and community crisis. It must be felt by our politicians as a political crisis. If there is time to negotiate on behalf of Burundi and the Congo (which we support) - there must be time to resolve policy questions on AIDS.
This year our Minister of Health has had time to go to Iraq, Switzerland and the United States. She has not had time to take a decision on ARV treatment. This is immoral.
As will be seen, this campaign will follow in the traditions established by the ANC and United Democratic Front in their protests against unjust laws. However, our protest is against political negligence and unjust policies which willfully withhold life-saving medicine and other resources from people in desperate need.
AIDS in South Africa has created a social crisis that is being felt in millions of households. This crisis has to be addressed visibly, urgently and at the highest possible levels of political leadership. This is not happening at the moment. The TAC's actions are intended to draw renewed attention to this crisis.
In conclusion, we state plainly that government can avert this campaign by responding to our cries. Partnership is our strongest desire. We end with a repetition of TAC's two reasonable demands:
1. That government make an irreversible and unequivocal commitment to a public sector ARV programme.
2. That government return to the negotiations at Nedlac and make a commitment to signing a Framework Agreement with business, labour and community on a National HIV/AIDS Prevenytion and Treatment Plan.
We ask you to support this campaign. Stand up for Our Lives!