HIV/AIDS Care, Treatment and Prevention: briefing by TAC, ALP and NAPWA

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Health

20 February 2003
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Meeting report

HEALTH PORTFOLIO COMMITTEE
21 February 2003
HIV/AIDS CARE, TREATMENT AND PREVENTION: DISCUSSION

Chairperson: Mr L Ngculu (ANC)

Relevant Documents
TAC Submission (Appendix)
Nedlac Framework Agreement on a National Prevention and Treatment Plan for Combating HIV/AIDS
AIDS Law Project Submissions:
Briefing: Law and Treatment Access
Insurance and HIV AIDS
Insurance; Law and Treatment Access 1993-2002

Relevant Websites
Treatment Action Campaign
AIDS Law Project

SUMMARY
Three HIV/AIDS lobby groups (the Treatment Action Campaign, the National Association of People Living with AIDS and the AIDS Law Project) addressed the Committee on their activities and spoke on pertinent issues around prevention and treatment.

TAC noted that although its position was at times critical of some aspects of government policy it was nonetheless made in a spirit of partnership, co-operation and respect. TAC has pledged its fullest and unreserved commitment to HIV prevention, treatment and care. Treatment Action Campaign maintained that government, labour and itself had reached a binding agreement, which it called on government to honour by implementing the HIV/AIDS treatment and prevention plan. TAC called for the issuance of licences under Section 4 of the Patents Act to acquire compulsory licences for the generic production of all anti-retrovirals. It urged the government to announce the implementation of community anti-retroviral treatment programmes in every province before the end of February 2003 and to commence its implementation before the end of June 2003.

NAPWA lauded the government's HIV/AIDS plans but noted that the real problem resides in the implementation of these policies. Napwa did criticise the government of being preoccupied with organising events rather than focussing attention and resources on the treatment and prevention of the AIDS pandemic. The government was urged to pursue positive media coverage to create a sense of hope amongst people living with HIV/AIDS and to build local structures for treatment and prevention. It also spoke of the need for moral regeneration and lifestyle changes to prevent infection.

The AIDS Law Project safeguards and advances the interests of people living with HIV/AIDS. It challenges all forms of discrimination and works towards gaining affordable treatment for people living with AIDS.

In conclusion the Chair said that the Committee looked forward to interacting with the Department on the various issues that had been raised in the submissions.

MINUTES
The Chair informed the committee that three HIV/AIDS lobby groups would address the meeting on their activities: the Treatment Action Campaign (TAC), the National Association of People Living with AIDS (NAPWA) and the AIDS Law Project.

Briefing by Treatment Action Campaign (TAC)
Zackie Achmat introduced the TAC presentation, Mandla Majola spoke on TAC's campaigns for 2003, Nonkhosi Khumalo spoke on Mother to Child Transmission and provincial implementation of the Constitutional Court order, Thembeka Majoli spoke on TAC's treatment literacy programmes, Nathan Geffen spoke on the costing study on Anti Retroviral use and the structure of TAC and Nomfundo Dubula spoke about Project Ulwazi.

Mr Achmat stated that the magnitude of the HIV/AIDS challenge that the country was faced with called for a concerted, co-ordinated and co-operative national effort. He urged for the marshalling of the government in each of its three spheres and the panoply of resources and skills of civil society for the common goal of assaulting the AIDS pandemic. This venture could only be achieved if there was proper communication, especially by government, which should inspire and lead this important war.

TAC appealed to the committee 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. It called for the adoption of a National Treatment and Prevention Plan for HIV/AIDS in order to save millions of lives by government, business, labour and the community. The group noted that an average of over 600 people die everyday of HIV/AIDS in the country and called for urgent co-operative effort to arrest the pandemic.

TAC called for the issuance of licences under section 4 of the Patents Act to acquire compulsory licences for the generic production of all anti-retrovirals. It urged the government to announce the implementation of community anti-retroviral treatment programmes in every province before the end of February 2003 and to commence its implementation before the end of June 2003. TAC then pledged its fullest and unreserved commitment to HIV prevention, treatment and care efforts noting that though its submission is critical of aspects of government HIV/AIDS policy, it is nonetheless made in a spirit of partnership, co-operation and respect.

Briefing by National Association of People Living with AIDS
Nkululeku Nxesi, Director of NAPWA (the National Association of People Living with AIDS) claimed that it is the largest lobby group whose membership consists of people living with and affected by the AIDS pandemic. NAPWA explained that its main brief was to provide capacity building for its members including vigorous and sustained lobbying and advocacy. The group noted that due to the complexity of the AIDS problem it had engaged in partnership development management to help facilitate networking among all the stakeholders.

NAPWA offers support and advice to HIV sufferers and at the same time facilitates small-scale income-generating projects for its members. The Committee was informed that as a mass based organisation, NAPWA adopted a holistic approach in fighting the AIDS pandemic and that in this respect it encompasses broader issues of social development.

NAPWA noted with concern the government's preoccupation with organising events rather than focusing attention and resources on the treatment and prevention of the AIDS pandemic. It urged the government to pursue positive media coverage to create a sense of hope among people living with HIV/AIDS and to build local structures for the treatment and prevention of new infection. The group called upon the government to urgently address the twin scourge of poverty and unemployment in view of the reality that the majority of deaths among people living with HIV/AIDS was due mainly to lack of access to basic nutrition and treatment.

NAPWA further informed the Committee that the government's home-based care programme needed to be sustained and revamped adding that the counselling program was very weak in view of the fact that one could not counsel a hungry person. The group suggested that social grants be extended to unemployed people while at the same time making provision for anti-retrovirals with proper management. NAPWA made a strong case for the improvement of literary levels among the populace. The group also urged financial institutions to stop discriminating against HIV/AIDS people. NAPWA lauded the government's HIV/AIDS plans but noted that the real problem resides in the implementation of these policies.

Briefing by AIDS Law Project
Fatima Hassen presented on the history and structure of ALP, Teboho Motebele presented on insurance practices and legal problems encountered in the private finance sector and Jonathan Berger presented on the work done by the Law and Treatment Access Unit especially on the complaint lodged at the Competition Commission against GlaxoSmithKline and BoehringerIngelheim.

The AIDS Law Project addresses issues touching on the Employment Equity Act, the Medical Schemes Act, the Equality Act. It institutes litigation where necessary to safe-guard and advance the interests of people living with HIV/AIDS. She noted that the main challenges the project is faced with is the extent of ignorance of the law amongst its clients, access to treatment and novel forms of discrimination that keep popping up. She pointed out that some of the problems that PWAs (People Living with AIDS) face are the absence or inadequate insurance cover and certain exclusion clauses that tend to discriminate against them.

ALP recommended that the pre-testing counselling be made a legal requirement and that the onus should shift to the insurance industry to show why PWAs should be excluded from accessing cover. She also recommended that the use of exclusion clauses be reviewed and that the insurance companies should be made responsible for the actions of the brokers. She lamented that there were huge disparities between prices charged by the pharmaceutical companies. This tends to limit access to affordable treatment by the PWA. She appealed to the committee to prevail upon the Competition Commission to urgently use its powers to investigate practices of the drug companies in order to ensure that nobody denies the populace accesses to affordable treatment.

Discussion
Dr Jassat (ANC) sought clarity on the membership of the lobby groups in view of the fact that there seemed to be a duplication of functions. Had these interest groups considered condensing their activities under one umbrella group?

TAC said that it operates in all the provinces and that it consists of 7 000 members across the colour bar. It added that its members were encouraged to register membership with NAPWA.

Nkululeku Nxesi Director of NAPWA, admitted that there was indeed a need for an umbrella body and that the demise of NACOSA left a huge gap, which had led to a number of duplications and misrepresentation especially when various groups were invited to make presentations at international forums. It pointed out that initially NAPWA was an organisation exclusively for the PWAs but that it was later considered prudent to take aboard those affected by the pandemic as well so as to advance a holistic approach to the eradication of the HIV/AIDS. NAPWA, however, revealed that efforts were underway to rebuild an umbrella body to cater for the various HIV/AIDS lobby groups.

Dr Luthuli (ANC) commended the presenters for an in-depth submission, which was for the most part complimentary to the oversight work of the committee. She asked TAC to revisit its presentation on the issue of treatment and prevention versus the status quo, which she felt was confusing in the way it had been structured.

Ms Dudley (ACDP) said that she did not understand what NAPWA was addressing when it alluded to the question of lifestyles.

NAPWA replied that its reference to lifestyles was directed at "moral regeneration", which should specifically address men's attitudes toward their female counterparts. There were numerous women lobby groups yet there was none for men. However the need for change of lifestyles largely depended on the later group.

Ms Dudley inquired how social grants would assist the fight against the pandemic as proposed by NAPWA.

NAPWA explained that provision for social security was one of the important intervention strategies that would go a long way in availing basic nutrition and treatment to the PWAs.

Dr Jassat asked what was the relationship between TAC, NAPWA and Love-life and how this impacted on the prevention and treatment programmes the different lobby groups advance.

NAPWA noted that its relationship with TAC had both positive and negative sides but that it was not keen to go into details at this forum. The group said it had at its general meeting resolved not to work with TAC. The group pointed out that a few of its members had been employed by Love-life as ground-breakers.

Ms Mathibela (ANC) asked how TAC dealt with the question of treatment literacy.

Mr Achmat explained that TAC was doing its best to workshop the people around the issue of the treatment regime and that it was confident that side effects were manageable.

Ms Dudley (ACDP) asked if TAC and Labour had struck an agreement with the government as had been alleged and whether the government was reneging on its part of the bargain.

Mr Achmat submitted that as far as TAC was concerned an agreement on the terms of which were very clear had been reached with the government. TAC conceded, however, that there were a few outstanding issues in particular on the question of setting targets for the provision of free medication for PWAs. TAC was ready and willing to meet the government with a view to thrashing out all the outstanding issues in order to expedite the implementation of the terms of the agreement.

Ms Dudley (ACDP) asked if the contents of the much talked about NEDLAC Agreement could be made available to the committee and the public at large so that its substance was ascertained and grasped.

Mr Achmat pointed out that the entire agreement was published in the 'Business Day' paid for by the TAC and that copies of the agreement would be made available to members of the committee.

At this juncture the Chair intervened to object to the insinuation that the President had not been speaking the truth when he declared that government had not reached an agreement with labour and civil society.

Attempts by Mr Achmat to explain himself were cut short by the Chair who insisted that he had an obligation to uphold the "dignity of the House" and that he would not allow the committee to be drawn into a match of mudslinging. The Chair also overruled several committee members who were edging to comment on the issue. He noted that TAC had already clarified that there were outstanding issues that remain to be thrashed out between the parties before an agreement could be struck.

The Chair pointed out that there was no way an agreement could have been reached when outstanding issues remained between the parties. He took exception to the statement that an agreement had been reached between the parties and called for all the parties concerned to come back to the negotiating table to clear the outstanding issues.

Mr Achmat insisted that as far as TAC was concerned an agreement had been reached with the government. He concurred with the Chair that all the stakeholders must immediately sit together to clear whatever may be outstanding as time was of essence here. He appealed for support from committee members to intervene and expedite the process since people were dying en-mass and that there was no time for prevaricating.

Ms Malumise (ANC) asked if TAC was involved in the Government AIDS plan and the Home Based Care program.

The TAC replied in the affirmative stating that it was involved in all programs that are designed to benefit PWAs and prevent further infections.

Ms Malumise (ANC) asked if the AIDS Law Project could successfully argue a case for a person who had died of an AIDS-related illness yet the death certificate did not disclose this factor.

Ms Hassan replied that her organisation had always advocated for a two-paged information death certificate in order to bring clarity to the reason for the death of a person.

Ms Malumise inquired if NAPWA had identified any traditional medicine that could cure the AIDS ailment.

NAPWA clarified that as of to-date there was no known cure for HIV/ AIDS but called on the government to establish meaningful links with traditional healers for purposes of regulating their treatment activities. He noted that some of the traditional healers had distinguished themselves in the treatment of the opportunistic infections that plague people living with HIV/AIDS.

Ms Rajbally (MF) called for the three spheres of government to work together with civil society in the common cause of fighting the AIDS pandemic.

Ms Mathibela (ANC) concurred with NAPWA's submissions that the government's counselling program was not adequate. She felt that the call for moral regeneration was right on target in view of the fact that in some cases even family members were in the dark as to the HIV/AIDS status of one of their own. Did these organisations have representation in the deep rural outposts or are they only urban based.

NAPWA replied that it had branches in many of the rural areas but that due to resource constraints, it did not cover the vast majority of these areas, as it would have wanted to. NAPWA was concerned about non governmental organisations whose only ability was to put together a convincing proposal yet nothing is being done on the ground.

Ms Tshwete (ANC) noted that NAPWA had acknowledged that the government has a good AIDS plan and wondered whether the other organisation shared the same view in this assessment. She called for all stakeholders to work together in order to speed up implementation of these plans. Why was it only black people who were involved in AIDS related marches?

NAPWA replied that the indisputable reality was that the majority of the people living with HIV/AIDS were black people and that this segment of the population represented the majority of people without access to affordable treatment. NAPWA therefore argued that it was only natural that black people were most prominent in the demand for affordable treatment and proper prevention plans.

TAC stated that black people did not have access to insurance cover hence their zest to march in order to call on the government to come to their rescue.

The Chair assured the lobbyists that the Committee had noted the complaint regarding Limpopo, Mpumalanga and the Free State who have allegedly failed to implement the Mother-to Child prevention treatment regime. He said that the Committee would include these provinces in its programs so that they could explain why they had not implemented these important interventions. He promised that the committee would interact with the Finance Committee to check on the issue of investigating insurance companies that cheated on the people.

Overall the Chair concurred with members that the submissions were very well researched and that members had been greatly assisted in grasping the pertinent issues around prevention and treatment. He noted that the Committee looked forward to interacting with the Department on the various issues that had been raised in the submissions.

Meeting adjourned.

Appendix
TREATMENT ACTION CAMPAIGN (TAC)
SUBMISSION TO THE PORTFOLIO COMMITTEE ON HEALTH
21 February 2003

Chairperson, Comrade James Ngculu and all Members of the Portfolio 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

  • Campaign for affordable treatment for all people with HIV/AIDS
  • Campaign and support the prevention and elimination of all new HIV infections
  • Promote and sponsor legislation to ensure equal access and equal treatment of all people with HIV/AIDS
  • Challenge by means of litigation, lobbying, advocacy and all forms of legitimate social mobilisation, any type of discrimination relating to treatment of HIV/AIDS in the private and public sector
  • Educate, promote and develop an understanding and commitment within all communities of developments in HIV/AIDS treatment and care
  • Campaign for affordable and quality access to health care for all people in South Africa
  • Train and develop a representative and effective leadership of people living with HIV/AIDS on the basis of equality and non discrimination irrespective of race, gender, sexual orientation, disability, religion, sex, socio economic status, nationality, marital status or any other ground.
  • Campaign for an effective regional and global network comprising of organisations with similar aims and objectives.

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:

  • We supported the government on the Medicines Act (Act 90 of 1997). TAC assisted with the mobilisation of hundreds of thousands of people in South Africa and across the globe to defeat the pharmaceutical industry's greed.
  • We supported the government against the insurance industry and vested interest in private health-care to ensure that the Medical Schemes Act covers any person regardless of health-status including HIV/AIDS.
  • Many who are now TAC members and allies ensured mass support for the Employment Equity Act that included the prohibition of unfair pre-employment HIV testing and non-discrimination.
  • We support every real effort at social transformation and the alleviation of poverty in our country.
  • Our HIV positive t-shirt has become a symbol of openness, hope and solidarity. It is a fitting memorial to Comrades Gugu Dlamini and Simon Nkoli.

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:

  • The adoption of a National Treatment and Prevention Plan for HIV/AIDS to save millions of lives by government, business, labour and the community. On average over 600 people die everyday of HIV/AIDS in South Africa. Our Constitution guarantees rights to life, dignity, equality and health-care. We do not expect everyone to get ARV treatment now. We want a progressive roll-out with the development of health-care infrastructure. We want health-care workers to be trained across the country, especially in the poorest areas. Ensure the mass distribution of the Standard Treatment Guidelines for Opportunistic Infections and other laudable government policies. If there are further negotiations necessary on a national treatment and prevention plan, let us do it immediately and sign the plan as soon as possible.
  • Issue compulsory licenses. Once again, we urge the Minister of Health and the Minister of Trade and Industry to use the section 4 of the Patents Act to acquire compulsory licences for the generic production of all anti-retrovirals. We offer to research, provide legal support, and through social mobilization to ensure that the whole world understand that our government is taking action to save lives.
  • We urge government to announce the implementation of community anti-retroviral treatment programmes in every province before the end of February 2003 and to commence their implementation before the end of June 2003. This can be a progressive roll-out based on available resources as announced in the Medium Term Economic Framework. South Africa can aim to treat 100,000 people in the public sector within the next 18 months according to WHO or SA HIV/AIDS Clinician Society standards. We offer to ensure that everywhere government roll-out, TAC and our allies will assist with community preparedness.
  • We pledge our fullest commitment to HIV prevention, treatment and care efforts.

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: "Act with urgency and compassion or face civil disobedience." 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:

  • preventing transmission
  • mother-to-child transmission
  • treatment of opportunistic infections
  • social support and security
  • highly active antiretroviral therapy and
  • the importance of human rights and gender equality

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 government's standard treatment guidelines for 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:

  • high uptake rates of mother-to-child transmission prevention and voluntary counseling and testing in areas where workshops are frequently held, such as an 81% uptake rate in Khayelitsha
  • increased knowledge of treatment among people who often have very limited educational backgrounds
  • increased openness and destigmatisation in areas where TAC is active.

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.

  • There is frequently a shortage of health-care workers and counselors in the hospitals implementing, or wishing to implement, mother-to-child transmission prevention programmes.
  • Policy on breast-feeding versus formula milk need to be clarified. This is a difficult issue and the TAC wishes to assist the Department of Health in formulating and implementing policy in this regard. The TAC's position on this issue is identical to that of the World Health Organisation.
  • Single-dose Nevirapine is the simplest mother-to-child transmission prevention regimen, but it is also the least effective and is associated with resistance issues. We recommend that where capacity exists, as is happening in the Western Cape, the gradual progression to triple-drug regimens. One way of progressing towards this standard would be the introduction of short-term regimens combining the Thai-CDC AZT regimen with the single-dose Nevirapine regimen. This would reduce resistance problems and improve the efficacy of programmes.
  • There is frequently insufficient dissemination of information on mother-to-child transmission prevention programmes. This often results in low uptake rates, as in the North-West province. This is one area where NGOs and government should work together to ensure greater public awareness.

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:

  • Voluntary counseling and testing, including safer sex education
  • Mother-to-child transmission prevention
  • Improvements to the management of sexually transmitted infections, such as making acyclovir available in clinics
  • Highly Active Antiretroviral Therapy

 

    • Benefits of Treatment and Prevention

The key conclusions reached by the actuaries are as follows. Scenario two, the treatment and prevention scenario, would

  • reduce by nearly three million, the number of HIV related deaths between 2002 and 2015,
  • result in 2.5 million fewer new HIV infections between 2002 and 2015,
  • halve the number of orphans produced by the HIV epidemic by 2015
  • result in life-expectancy in South Africa dropping at the worst point in the epidemic to approximately 50 instead of 40.

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:

  • Using generic antiretroviral medicines would incur substantial savings over patented ones.
  • Further reducing the costs of generic medicines to R300 per month for a first-line regimen and R400 per month for second-line would incur even more substantial savings.
  • Assuming current generic prices, the introduction of the entire programme would cost less than R500 million in the first year and gradually go up to about R7 billion in the 5th year of the programme. In 2015, the cost of the entire programme peaks at R20 billion.
  • Antiretroviral medicines are a substantial proportion of these costs, starting at R224 million for adults in the first year and rising to R18 billion in 2015.

However, this pessimistically assumes that:

  • Medicine prices do not come down any further and no further technological improvements for managing HIV/AIDS, such as vaccines become available.
  • Employers do not treat their employees, already contradicted by the programmes of companies such as Daimler Chrysler, Anglo American and De Beers.

 

  • Money is not obtained from the Global Fund to Fight AIDS, TB and Malaria.
  • The programme is rolled out to 90% of the population who require it, unusually successful by health intervention standards.

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:

  • The adoption of a National Treatment and Prevention Plan for HIV/AIDS to save millions of lives by government, business, labour and the community. On average over 600 people die everyday of HIV/AIDS in South Africa. Our Constitution guarantees rights to life, dignity, equality and health-care. We do not expect everyone to get ARV treatment now. We want a progressive roll-out with the development of health-care infrastructure. We want health-care workers to be trained across the country, especially in the poorest areas. Ensure the mass distribution of the Standard Treatment Guidelines for Opportunistic Infections and other laudable government policies. If there are further negotiations necessary on a national treatment and prevention plan, let us do it immediately and sign the plan as soon as possible.
  • Issue compulsory licenses. Once again, we urge the Minister of Health and the Minister of Trade and Industry to use the section 4 of the Patents Act to acquire compulsory licences for the generic production of all anti-retrovirals. We offer to research, provide legal support, and through social mobilization to ensure that the whole world understand that our government is taking action to save lives.
  • We urge government to announce the implementation of community anti-retroviral treatment programmes in every province before the end of February 2003 and to commence their implementation before the end of June 2003. This can be a progressive roll-out based on available resources as announced in the Medium Term Economic Framework. South Africa can aim to treat 100,000 people in the public sector within the next 18 months according to WHO or SA HIV/AIDS Clinician Society standards. We offer to ensure that everywhere government roll-out, TAC and our allies will assist with community preparedness.

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

 

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