a. The business sector stated that it would require until the end of January to complete its consultative process.
b. The government, by contrast, gave no indication of time frames and, in early December, senior government negotiators become uncontactable as attempts were made to ascertain government's views.
"The conference also called for the implementation of a national prevention and treatment plan to control the spread of HIV and save the lives of all people living with HIV and AIDS. In this context the conference called for the development of an effective antiretroviral therapy policy, which will ensure that these drugs are available in the public health sector as mentioned in the April Cabinet statement. " (Taken from NAPWA web-site on 24/2/2003)7. We have received queries regarding the square-bracketed text in the agreement. Text in square brackets had not been agreed upon at the last meeting - and was intended for further discussion. However, what should be noted is (a) that very few such paragraphs remain and (b) by implication all other parts of the text were agreed upon by the Task Team. It is also important to note the extent of agreement between all the sectors in the section dealing with antiretrovirals.
Chairperson, Comrade James Ngculu and all Members of the Portolio Committee
Thank you for this opportunity to address you. We also thank you for receiving our memorandum to Parliament and government last week. Today, we are here to amplify our urgent request for a national treatment and prevention plan, as well as, to acquaint the committee with our work.
'The magnitude of the HIV/AIDS challenge facing the country calls for a concerted, co-ordinated and co-coperative national effort in which government in each of its three spheres and the panoply of resources and skills of civil society are marshaled, inspired and led. This can be achieved only if there is proper communication, especially by government.' Constitutional Court Judgment, Minister of Health v TAC, 5th July 2002
The objectives of the TAC are to
TAC members and leaders have a history of working with the government in the development of public health care system that provides for the needs of all people in South Africa. This includes work and promotion of the NACOSA National AIDS Plan in 1994 and supporting government efforts to promote primary health care.
Since at least 1987, TAC members have worked in progressive organisations and poor communities to prevent HIV transmission, to promote openness on HIV/AIDS, and, where possible, to take care of our people.
In November 1998, Tseko Simon Nkoli, a gay anti-apartheid activist, ANC member and Delmas Treason Trialist died of AIDS related illnesses. We appealed to Comrade Terror Lekota who attended his memorial service to ensure that Government works with us to develop treatment for our people and to act on the prevention of mother-to-child HIV transmission.
Our record speaks for itself:
TAC appeals to the Parliamentary Portfolio on Health to act urgently and immediately to help prevent millions of new infections, as well as premature, unnecessary and avoidable deaths of millions in South Africa. Specifically, we urge:
We once again wish to acquaint the Parliamentary Portfolio Committee on Health with our work. This submission, although critical of aspects of government HIV/AIDS policy, is made in a spirit of partnership, co-operation and respect.
Building on the foundations laid during past campaigns, and utilizing the infrastructure already in place in our district and provincial branches, we, the TAC will work to improve the quality of life for people living with HIV/AIDS in South Africa. Our efforts to this end will focus on two main areas. We will have two major campaigns this year. This will include campaigning for improved health-care infrastructure and the need for cheaper anti-retroviral drugs.
Both campaigns will continue work already started by the TAC at national and provincial levels. They are based on the legal obligations of government and the political commitments made by Cabinet and the ANC Conference in Stellenbosch last year. They are both based on solid foundations built by Parliament in its laws. In both these areas, our intent, as ever, is to aid government in the fight against the pandemic that threatens to overwhelm our country and continent.
The Portfolio Committee knows that TAC has a record of supporting every genuine effort of government in health care promotion, development and social delivery. While the TAC has attempted always to work alongside government, assisting it in any way possible, you know better than we do TAC has always defended our peoples' right to life, dignity and health care. Even, when this meant criticizing government. We have marched, prayed, petitioned, argued and negotiated.
Apart from exposing patent abuse by Pfizer and other drug companies, we have never broken the law because we regard this government as legitimate. But our people are dying. The reticence of government to provide its people with a treatment plan and commit to anti-retroviral therapy after more than four years of pressure forced the TAC into an impossible position. Just as the conflict over mother-to-child HIV prevention was unnecessary, we are once again on the threshold of serious conflict.
While the importance of these campaigns to our organization will make them central to our future development, we will not cease to be involved in other areas and campaigns fundamental to our broad aims and values. One such aim is the strengthening of civil society in Africa, and it is in keeping with this aim that we will continue to strengthen links between our own organization and organizations similar to ours, both within South Africa, and across the African continent, particularly through PATAM, the Pan African Treatment Access Movement. Our belief is that strong civil society is a necessary condition for the growth, support and success of democracy in Africa. To this end, we intend to continue to play a supporting role in other social campaigns, notably the campaigns for universal social security and for job creation.
Central to any effective struggle against HIV/AIDS is a professional healthcare service able to meet the challenges of the pandemic. We realize that in order for us to be successful as an organization we must help government, at both a national and local level, to strengthen the infrastructures of the healthcare services. With this in mind, our provincial and district-based branches will attempt to assess and monitor the extent of public access to clinics and hospitals, the quality of care provided, the working conditions of health care professionals and their training, and the availability of medicines. While attempting to educate the people as to their constitutional right to healthcare, as guaranteed under section 27 of the Constitution, we will work to improve the flow of information between communities and their healthcare professionals, assisting these professionals as much as possible in their work. As part of our campaign for an improved healthcare service, we have devised and produced a clinic survey questionnaire, allowing us, through the work of our district branches, to evaluate the status of healthcare facilities nationwide, even in the poorest of communities. This will in turn allow us to asses the requisite allocation of resources, to encourage government in the areas in which it has been successful, and to criticize it in areas in which it has failed. In conclusion it is worth noting that, in the event that government does indeed agree to implement a nationwide treatment plan, our work in clinics and hospitals across the country will provide us with the perfect platform to assist government in the functional aspects of such implementation.
Since its inception in 1998, the TAC has campaigned for the pharmaceutical industry to lower medicine prices and issue non-exclusive voluntary licenses. On many occasions we have negotiated with the industry or attempted to do so. The time for negotiating with the pharmaceutical industry is over. Government has the power to ensure that our people do not continue to die needlessly while drug companies profiteer. We urge government to act now. In the mean time, a complaint has been lodged with the Competition Commission against the pharmaceutical companies Boehringer-Ingelheim and GlaxoSmithKline for the excessive prices charged by these companies for life-saving antiretroviral medicines. In this, the second of our major campaigns, we will focus on the need for locally produced generic anti-retroviral drugs, which will be more affordable and therefore more readily accessible. Government has a legal duty to use its power to save lives. We once again urge this committee to ask the Minister of Health and the Minister of Trade and Industry to obtain compulsory licences immediately for all anti-retrovirals. As always, we will urge the Medicines Control Council to ensure the safety, efficacy and quality of all medicines and we applaud the recent steps of the MCC to register generic anti-retrovirals. We have previously requested government support for our excessive pricing complaint against the drug companies.
Hundreds of people die every day because of HIV/AIDS. These deaths are premature, unnecessary and avoidable. We have attempted to use every channel to ensure that our voices are heard. Every day we face illness and death. In TAC, our grief is shared in solidarity with our comrades. But, we cannot reach the millions of mothers, children, fathers and grandparents who need not only solidarity but life-saving medicines. The TAC has attempted not to oppose but to support government. However, the delays and unfulfilled promises we have experienced through the government's failure to commit to a national treatment and prevention plan has led us to the brink of a campaign of civil disobedience. In October 2002, we promised Deputy-President Jacob Zuma that TAC would postpone a civil disobedience campaign until 28th February. He indicated that would be the time-frame government would need to develop a treatment and prevention plan. We have kept our side of the bargain. Government has not signed the Nedlac agreement. Nor has organized business. TAC calls on the Parliamentary Portfolio Committee on Health to act with urgency, speed and understanding for our grief. Just as Parliament can unite to sit up day and night to pass legislation on immigration or floor-crossing, we urge you to ask the Joint Task Team from the Health and Finance Committees to spend every available hour to report on their progress. We urge you to ask business and government to identify every obstacle in the Nedlac agreement and to work with the labour and community sectors to sign the agreement. Many people were under the misapprehension that the largest HIV/AIDS march in the history of our country on 14 February was only about the Nedlac agreement. Some people have avoided the real demands: implement the Cabinet Statement of 17 April 2002, treat our people and save lives.
At the march we repeated our call to government: 93Act with urgency and compassion or face civil disobedience.94 On 21 March 2003, TAC members will show to the country and the world that there will be no business as usual for government. TAC will act in a peaceful and dignified manner to demonstrate against government policy. Without any malicious intent, but through sheer desperation, we will fill the prisons and jail-cells in order to gain treatment for people living with HIV/AIDS and unable to afford that which should be freely available to all - life. If government requires some evidence of the sincerity of our intentions, members of parliament may wish to observe the first of our civil disobedience preparation workshops, taking place on Sunday the 23rd February 2003 from 11h00 on the steps of St. George's Cathedral. Our people are dying. Four years have been long enough to deal with all obstacles. Government has the choice and resources to implement a treatment and prevention plan, working and poor people do not. We call on the Parliamentary Portfolio Committee on Health and Finance to help mediate and avoid this conflict. Let us work together.
Treatment Literacy has been, and continues to be an important part of the TAC's work. In the struggle against HIV/AIDS, raising awareness among communities is of vital importance to reduce HIV transmission and to ensure that people with HIV/AIDS have the knowledge to live longer, healthier lives. Where access to information is impeded, the spread of HIV is greatly aided by misinformation, misunderstanding and pervasive mythologies that undermine the community and spread fear, suspicion and anger. Our Treatment Literacy program serves two major functions; in the first place, people living with HIV/AIDS learn how to take care of themselves: they learn how to take multi-vitamins, how to maintain a suitable diet, how to avoid stress, and how to take the appropriate medication at appropriate times - in essence they learn that HIV does not have to be a death sentence; in the second place, the community at large discovers the importance of preventative measures (such as the use of condoms and femidoms) while, through open discussion and disclosure, the stigma associated in the community with HIV/AIDS is reduced.
The TAC Treatment Literacy campaign focuses on a number of important areas, which we refer to as the five pillars of our programme:
TAC's treatment literacy programme matured in the Western Cape under what we call Project Ulwazi. This is the model we are now rolling out in our other provinces. Over the last few years, we have conducted hundreds of treatment literacy workshops reaching tens of thousands of people in Western Cape, Gauteng, Eastern Cape, Kwazulu-Natal, Limpopo and Mpumalanga provinces.
TAC members run treatment literacy workshops in TAC branches, hospitals, clinics, support groups (of which there are over 50 in the Western Cape), factories and schools, as well as through other NGOs. Our work is complemented by a range of materials some of which are included with this submission. We worked with the Community Health Media Trust to produce a twelve part treatment literacy video series. This year it will be translated into a number of African languages. There has been demand for these videos from organizations in other African countries as well.
Our treatment literacy programmes and materials are continuously being modified and improved. Included for your information are simplified copies of the government92s standard treatment guidelines or opportunistic infections. TAC printed more than 50 000 copies of these for distribution to people living with HIV/AIDS.
Some of the recognized successes of the programme include:
TAC has run programmes with and for many public sector nurses and doctors. Treatment literacy is an area where civil society organisations and government can and should work together to reach more people and streamline programmes and materials.
The TAC began campaigning for mother-to-child transmission prevention from the organisation's inception in December 1998, but discussions between government officials and future TAC members began even earlier. After four years of discussions, civil actions and unfulfilled government promises, the TAC believed it had no reasonable course of action but to litigate to ensure the implementation of mother-to-child transmission prevention.
After six hearings at the Pretoria High Court and the Constitutional Court, of which every judgment went in the TAC's favour, this difficult saga for both the TAC and government should have come to an end. However, although most provinces began implementing the court judgment, our investigations in Mpumalanga demonstrated that the MEC for Health in that province was actively flouting the court's ruling. After unsuccessful attempts to obtain details from her as to how the programme would be rolled out, we were left with no reasonable choice but to pursue contempt of court charges, which we are currently engaged in.
It should be noted that in addition to MEC Manana's failure to implement the court judgment, there have been numerous allegations against her of corruption and intimidation of health-care workers and NGOs. Our dealings with her have lead us to the conclusion that she is not fulfilling her constitutional obligations minister and we have called for her services to be terminated. A Human Rights Commission report on the Mpumalanga Health Deparment is due to be published soon. We urge this committee to intervene in Mpumalanga to redress the mismanagement that is clearly taking place there.
On a positive note Mpumalanga as of the second week of January had implemented mother-to-child transmission prevention in Rob Ferreira, Philadelphia, Witbank and Sabie Hospital hospitals. However, this has only come about as a result of what should have been unnecessary conflict between health-care workers and civil society organisations on the one side and the MEC for Health on the other.
We are happy to report that most other provinces have been more successful in implementing the court judgment and more willing to answer our requests for information. In particular, Gauteng, Kwazulu-Natal, North-West and Western Cape provinces have made significant progress in rolling out mother-to-child transmission prevention. Our investigations indicate that rollout has gone far beyond initial pilot sites. Newspaper reports indicate that Kwazulu-Natal rollout to obstetric facilities is almost complete. Western Cape has not only almost finished its rollout, but has introduced a better regimen than the single-dose Nevirapine one which was the subject of the court case.
The efforts of the North-West government in difficult circumstances should also be commended. The North-West government has indicated their concern to us about low take-up rates. We believe this is due to the lack of civil society awareness programmes in this province. The TAC wishes to assist with rectifying this problem, but we currently do not have the resources to do this.
The situation in Limpopo province is difficult to ascertain. We have met with members of the department and as of late there has been improved communication between TAC and the Limpopo government. We have confirmed rollout in Elim, Tshilidzini and Letaba hospitals. We have also conducted training workshops at these facilities. We have been informed that Louis Trichadt and Donald Fraser Hospitals have also rolled out.
Rollout in Eastern Cape Province has been slow. We are aware of programmes at Cecelia Makiwane and Rietvlei Hospital. Dora Nginza and Holy Cross are the only two sites that we are aware of having implemented since July last year.
The situation in Free State Province is also unclear. It is not clear whether any health facilities beyond the pilot sites have programmes. In a letter we received from the Free State Health Department a few weeks ago, it was indicated that every hospital has Nevirapine. However, no clarification has been received on the other aspects of the Constitutional Court order such as training of counsellors and nurses and availability of test kits.
So far as we can ascertain the Northern Cape Province has not rolled out beyond the pilot sites. We are concerned that the department is not communicating with us, despite us sending letters requesting information and meetings.
We have encountered a number of issues that require attention.
This country now has the world's largest mother-to-child transmission prevention programme. This is to be commended. But, there are many quality issues and stigma. Where provincial governments have been willing to work with civil society organisations such as TAC, productive mutually beneficial relationships have developed. This will ultimately result in the improvement of the public health-care system and benefit patients.
The TAC's highest decision making structure is a National Congress, which convenes approximately every two years. The first National Congress took place in March 2001 and the second one is due to take place in June 2003. The first Congress adopted the TAC Constitution and elected a National Executive Committee (NEC). The NEC consists of directly elected representatives and sector representatives, including labour, people with HIV, NGOs, faith-based organizations and youth. A secretariat comprising four members of the NEC is responsible for the day to day strategic decisions of the organization. The current secretariat members are: Zackie Achmat, Theo Steele, Tsakane Mangwane and Mark Heywood.
As of January 2003, the organization employed 24 fulltime staff in its national office and four provincial offices (KZN, GP, WC and EC). A management committee made of national staff members and the provincial co-ordinators report to and take direction from the secretariat. TAC also has a small satellite office in its infancy in Mpumalanga. It also has an active presence in Polokwane in Limpopo.
At the core of TAC are its volunteers. TAC volunteers are drawn from all walks of life, from the very poor to the well-off. Nevertheless the majority of our volunteers are working-class or poor African people, often living with HIV/AIDS. In principle, each provincial office is responsible for supporting and developing branches made up of volunteers. Branch leaders comprise provincial executive committees and are in regular contact with provincial offices and are responsible for disseminating information to branch members. Branches take on a diverse range of tasks, from assisting clinics to treatment literacy workshops to mobilizing for TAC events. In practice, we try to approximate this model as much as possible and certainly our provinces have moved a long way towards this.
TAC takes pride in the high quality of our financial accountability and bookkeeping. Our audits are published on our website. Our ratio of productivity, activity and visibility compared to expenditure is impressive. From the organisation's inception in December 1998 until end of financial year 2000, we spent R215,981. In 2001, we spent R1,351,434. In 2002, we spent R3,440,684. In this financial year, about to end, we expect to spend approximately R10 million.
TAC's main funders are Bread for the World, Atlantic Philanthropies, Medecins Sans Frontieres, South African Development Fund and Public Welfare Foundation. There are smaller funders such as Oxfam and others. We receive many small to medium sized individual donations.
TAC does not accept money from pharmaceutical companies or the South African Government. This is to ensure our independence on issues of dispute. We think it is important for the SA government to fund NGOs. However TAC is an advocacy group that has as one of its purposes to ensure that government has adequate HIV/AIDS policies, specifically in the fields of human rights, treatment and prevention. Therefore it would inappropriate to be dependent on government funding. TAC also does not take money from organisations who have discriminatory policies against people with HIV/AIDS or poor human rights records. For example, TAC does not take money from USAID.
TAC assists the Community Health Media Trust with the production of the popular Beat-It - Your Guide to Living with HIV/AIDS television series. This programme has reached more than 8 million viewers last year over thirteen weeks. We produce a regular newsletter called Equal Treatment and also run an email news service with over 1200 subscribers. Many of our publications are available on our website, www.tac.org.za.
Our organisations prides itself on facts and research. We believe that science and research must be used to serve social transformation. TAC research on mother-to-child HIV transmission, on the pharmaceutical industry, on the economics of HIV/AIDS prevention and treatment is well-known. The TAC commissioned UCT's Actuarial Science Department to examine the benefits of a treatment and prevention plan. We then, in conjunction with members of UCT's Economics Department examined the cost of implementing this plan.
In a nutshell, the actuaries examined two scenarios. The first scenario considered current government policy at the time that research began, which was to treat opportunistic infections. The second scenario examined the gradual introduction over a number of years across the country of the following additional health interventions:
The key conclusions reached by the actuaries are as follows. Scenario two, the treatment and prevention scenario, would
These benefits are considerable. Most of these benefits result from antiretroviral therapy, though all the other interventions are essential components for antiretroviral therapy to be optimally successful.
We examined the financial implications to the state, especially the Department of Health of these scenarios. We examined all aspects of cost, including staffing, wastage, monitoring and diagnostics, training, medicines and infrastructure development. We tried to be as realistic as possible in our cost assumptions, but where information was difficult to ascertain, we decided to err on the side of overestimation rather than underestimation.
Our key results are as follows:
However, this pessimistically assumes that:
Critically, this also does not account for the reduction in
state obligations due to lower opportunistic infection costs and
reduced orphan grants. When all of these factors are considered more
realistically, the cost of the programme to the state in its most
expensive year could be below R10 billion and still be highly
successful. This is a substantial investment. This financial burden
would have to be shared by the state, private companies, medical
schemes and the international community through multilateral aid. If
the state commits to these interventions, the TAC and civil society
will ensure that pressure is placed on these other sectors to meet
their share of the financial burden.
At the beginning, we placed the following issues that needed immediate attention before you. This is once again our call:
We pledge our fullest commitment to HIV prevention, treatment and care efforts.
Zackie Achmat, Nomfundo Dubula, Nathan Geffen, Nonkosi Khumalo, Thembeka Majali and Mandla Majola
On behalf of the Treatment Action Campaign