TAC E-Newsletter - 24 February 2003

Putting the Record Straight: What Really Happened at NEDLAC

Over the last few weeks, there were a number of claims by government officials and business concerning the nature of the 'agreement' on AIDS prevention and treatment reached at NEDLAC during 2002.  These ranged from denials that there was any agreement at all to claims that there is an agreement between TAC and COSATU but between nobody else. 

The facts are as follows:

1. In July 2002, TAC and COSATU forwarded to NEDLAC a request that a process be put in place to negotiate a National HIV/AIDS Treatment Plan.

2. In September 2002, the NEDLAC Management Committee established a senior HIV/AIDS task team to handle the request made by TAC/COSATU.  This task team was made up of the following persons:


This task team met for the first time by teleconference on 5 October 2002.  At this meeting, it was agreed that each sector would make written submissions regarding the content of a treatment plan.  This was done by three constituencies. Only business failed to make a written submission.

3. The task team next met on 23 October, where negotiations began on integrating the different written submissions into a single agreement.  Subsequently, the task team met on 24 October, 14 November, 21 November, 27 November, 28 November (twice) and 29 November. Out of these meetings a 'framework agreement' evolved through a number of drafts. Between meetings each constituency was given time to revert to its principals for guidance on areas of the document that was emerging. The only constituency that did not come back with further written submissions was business. Minutes and tape recordings were made of most of these meetings.

4. During this period, all the members of the task team were working towards trying to conclude this agreement by 1st December 2002, which was World AIDS Day.

5. On 29 November, first the business sector and then government indicated that they would need a further period of consultation before their principals could sign the agreement.  As far as the task team was concerned, however, all members were in agreement on the text that was finalized on this date.  The areas where there was still discussion were bracketed, and was limited to less than five paragraphs. At this point:

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. 

6. The Minister of Labour has claimed that civil society organizations, including NAPWA, have not been thoroughly canvassed about the Agreement. This is not true. The community sector has widely and consistently canvassed the principles it has argued must be entrenched in the agreement. Over 150 different community organizations, churches, NGOs, CBOs and academic institutions wrote to Nedlac supporting the negotiations; the members of the Nedlac community sector have had detailed sectoral discussions about the Agreement; monthly updates have been provided to the AIDS Consortium on the negotiations; the Agreement was raised and endorsed at the SANAC PWA Summit, which included the following in its declaration:
"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.

8. In the context of the current controversy, several points need to be made:

We call on government and business to end the controversy around this document.  There is a clamour for action and an increasing need for access to better care and support for people with HIV/AIDS.

F Lagadien
M Heywood
Nedlac Community Negotiators
24 February 2002

[Ends]

Submission to the Portfolio Committee on Health

21 February 2003

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.

 

Background and Aims of the Treatment Action Campaign (TAC)

'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

 

Health-care transformation

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:

 

What do we want?

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.

 

Where are we going?

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.

Healthcare

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.

 

The Competition Commission and Drug Companies

 

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.

 

Civil Disobedience

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

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:

 Project Ulwazi

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.

Mother-to-Child Transmission  Prevention

History

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.

Litigation

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.

Issues that Require  Attention

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.

Operation of TAC

Organisational Structure

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.

Staff and Offices

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.

Volunteers

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.

Funding and Finances

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's Media Output

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. 

Costs and Benefits of a Treatment and Prevention Plan

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.

 

Two Scenarios: Treatment and Prevention Versus Status Quo

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:

 

Benefits of Treatment and Prevention

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.

Cost

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.

Conclusion

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

[ENDS]