Subject: TAC e-newsletter 5 April 2001 Date: Thu, 05 Apr 2001 16:36:15 +0200 From: Nathan Geffen To: list@tac.org.za Treatment Action Campaign e-Newsletter: 5 April 2001 **************************************************** Email: info@tac.org.za Website: www.tac.org.za Johannesberg: 011 403 7021 Durban: 031 304 3673 Cape Town: 021 364 5489 ######## IN BRIEF ######## * Below is a report on the TAC National Congress (see IN DEPTH). * BRIEF: PLEASE SIGN THE MSF PETITION. Go to http://www.msf.org/petition/ The petition demands that 39 pharmaceutical companies drop their court action against the South African government. * TAC has launched Diflucan Watch. Following the implementation of the agreement between the South African government and Pfizer, whereby Pfizer will donate fluconazole (brand-name Diflucan) to the public sector, TAC has undertaken to monitor the programme. If a clinic or hospital in your area does not have Diflucan, please report it by phoning the Diflucan Partnership Program at 0800 343 582. Also, please notify TAC at one of the above telephone numbers. Please note that the TAC Defiance Campaign Against Patent Abuse will continue to involve the importation of generic fluconazole until the private sector price of Diflucan is reduced to less than R4 per 200mg capsule or Pfizer gives a voluntary license to the South African government for the production and importation of generic fluconazole. A pamphlet describing TAC's Diflucan Watch campaign will be made available on our website in the next few days. * We reprint a letter sent by the Treatment Action Campaign to President Yudof of the University of Minnesota, the patent holder on abacavir (see IN DEPTH). ########### IN DEPTH ########### THE FIRST NATIONAL TREATMENT CONGRESS OF THE TREATMENT ACTION CAMPAIGN (TAC) - SOWETO, SOUTH AFRICA 18-20 MARCH 2001 A SHORT REPORT On Saturday evening 17th March 2001, two "coloured" women from Paarl in the Western Cape, both in their forties, waited outside the tunnel at Du Toit's Kloof Pass for a bus to take them to the TAC Congress 1200kms away in Johannesburg. At midnight they realised that the TAC bus had passed that spot at 08h00 Saturday morning. They did not turn back. Instead, they got a lift from a truck driver and were delivered to the Johannesburg fresh produce market the following morning. They struggled from Sunday morning to get to Soweto and eventually arrived at the congress on Monday midday. And instead of lying down their weary bodies, they freshened up and were in the congress after lunch. On Sunday 18th March 2001, more than 500 registered delegates attended the opening rally of the Treatment Action Campaign's First National Treatment Congress. More than 169 organisations were represented: including, local drama groups, unemployed youth groups, organisations of people living with HIV/AIDS, Jubilee 2000, religious organisations, the South African Nursing Council and the three major trade union federations of country (with over 2,5 million members). It was also significant that delegates came from eight of South Africa's nine provinces, from rural areas as well as urban areas, and from the neighbouring countries of Botswana and Swaziland. The opening rally was followed by two days of deliberations and a closing ceremony addressed by Judge Edwin Cameron. OPENING RALLY More than five hundred people sang songs against Pfizer and drug companies, other freedom songs spoke of TAC's fight against drug companies and government. Posters and banners decorated the hall and everyone realised that we had work to do. The rally was opened by Promise Mthembu - a KwaZulu-Natal TAC activist and young woman living with HIV/AIDS. Mthembu spoke of government neglect and drug company culpability. She also spoke with force on why people should join TAC. After nearly a decade of HIV/AIDS work said Mthembu: "The first time I understood about the treatment of opportunistic infections, about preventing mother-to-child transmission and the use of anti-retrovirals was when I joined TAC. Before that the doctors just said, the costs of the medicines are too high. There is nothing we can do. TAC taught me to fight for my life." Mthembu urged all the delegates to ensure that the Standard Treatment Guidelines for the Treatment of Opportunistic Infections are implemented. "It is crucial to protect the health of everyone - but, more attention must be paid and research done on the health care needs of women with HIV/AIDS." Sindiswa Godwana, a TAC volunteer and woman living with HIV/AIDS from Cape Town addressed the rally next. She explained how becoming an activist helped her to stay healthy and to fight for medicine. She explained why she supported the TAC Defiance Campaign: "Drug companies are only interested in profits, we must put the lives of people first." Prudence Mabele, one of the first women to live openly with HIV/AIDS in South Africa criticised the government for its failure to take the epidemic seriously. Mabele, who leads the Positive Women's Network and is based in Gauteng, the richest province, spoke of the neglect at hospitals, as well as the pain and confusion caused by the debate on whether HIV caused AIDS. She called on President Mbeki to "learn and see how many of us are dying and how we are burying people every day." Mabele condemned drug companies for taking the government to court and asked all of them to withdraw from the Court Case. The Minister of Health had been invited but after weeks of deliberation declined the invitation on account of another engagement. Precious Matoso, the Registrar of Medicines, addressed delegates on behalf of the Health Department and called on everyone to campaign for access to affordable medicines. She also called on everyone to ensure that the organised theft of public sector medicines is stopped. Cunningham Ngcukana, the general secretary of the National Council of Trade Unions (NACTU) congratulated TAC on its work. He said that the organisation had brought a sense of purpose to the work of AIDS organisations and civil society. Ngcukana addressed the failures of government and civil society. He said that everyone had to ensure that HIV/AIDS was treated like diabetes. "We spend hundreds of rands every month on people who have diabetes. We encourage them to take their medicines. We make sure that they can work and take their insulin injections. We do not say there is no money for treatment and we do not judge people with diabetes. We must treat HIV/AIDS like we treat diabetes." Ncgukana said that "moralism" was at the root of not treating HIV/AIDS and behind the "scandalous attitudes" of nurses and other health care workers when dealing with people who have HIV/AIDS. "The Department of Health should hang its head in shame for running a department that violated people's rights." Bishop Phaswana from the Evangelical Lutheran Church in Southern Africa spoke of judgement. The church and religious leaders judged "morality" instead of understanding HIV/AIDS as an illness and therefore he said: "We are now faced with a catastrophe based on the failure of religious leaders to be compassionate and supportive." He spoke of rejection within the Church of its own members because they had HIV/AIDS. Bishop Phaswana called on all religious leaders to support prevention, care and treatment efforts without moralising. Florence Ngobeni, a woman living with HIV/AIDS then led the rally in remembrance - more than two thirds of the delegates present named one or more friends, sisters, brothers, husbands, wives, lovers, parents, children, cousins, other family members who had died. Health care workers named their patients who had died. Everyone lit a candle and the rally was lit with a few hundred candles. Ezio-Santos-Filho, a leader of Grupo PELA VIDDA from Rio de Janeiro in Brazil spoke of the importance of the congress and the need for solidarity between Brazil and South Africa. He spoke of the action taken by the Brazilian government to make medicines more affordable and its provision of free anti-retrovirals for every person who has AIDS. He was followed by Aditi Sharma from Action for Southern Africa (ACTSA), the former British Anti-Apartheid Movement who pledged their solidarity with TAC, all people living with HIV/AIDS and the efforts of the South African government to make medicines affordable. Eric Goemaere, the head of mission for Médecins Sans Frontières (MSF) in South Africa called on all delegates to ensure that anti-retroviral treatment becomes available in the public sector. He spoke of the need for social mobilisation and for TAC to remain independent of the pharmaceutical industry and government. The closing speech of the rally was made by the President of the largest trade union federation in South Africa, the Congress of South African Trade Unions (Cosatu). Comrade Willie Madisha spoke of the success of TAC's social mobilisation on HIV/AIDS. He said that TAC had won not only "a moral victory on the need for treatment of people living with HIV/AIDS" but it had won real gains including fluconazole, lower ARV prices, a commitment on MTCT prevention from government, standard treatment guidelines and admission to the Court Case. But, he pointed out the greatest battles still lay ahead. Madisha noted that Cosatu had called for HIV/AIDS to be treated as a health emergency at its Special Congress in September 1999. But, the government had failed to treat HIV/AIDS as a public health emergency. "There is no urgency from government, sometimes it drags its feet, at other times its HIV/AIDS work is incoherent. Broader social mobilisation is essential to engage government constructively. " Madisha condemned the Democratic Alliance's opportunism based on their desire to "embarrass the government rather than the need to find appropriate solutions for HIV/AIDS." He pledged the full support of Cosatu to ensure that HIV/AIDS treatment becomes available for all people with HIV/AIDS through lower prices, compulsory licensing and generic substitution. Madisha reiterated Cosatu's commitment to eradicate discrimination against all workers with HIV/AIDS through the implementation of the HIV/AIDS Employment Code of Good Practice and appropriate occupational safety measures for any cases of occupational HIV transmission. He called on all delegates to ensure that the work of TAC is taken seriously in every organisation because the "success of dealing with the epidemic depended on the social mobilisation started by TAC." He stated that "TAC must succeed for Africa, poor countries and communities across the globe". A play by a youth drama group from Tembisa led to the formal opening of the first national Treatment Congress and the close of the rally. The rally was chaired by Theodora Steele (Cosatu Campaigns Co-ordinator) and Mark Heywood (AIDS Law Project Head) - executive members of TAC. MONDAY 19th MARCH 2001 TAC's report, December 1998 - March 2001, was presented by its chairperson Zackie Achmat (Treatment Action Campaign: An Overview will be available at www.tac.org.za and it will be published in April 2001). He explained TAC's successes, weaknesses and its challenges. Achmat called for all treatment activists and people with HIV/AIDS to improve their knowledge of science, law, politics, development and economics as the only guarantee of success in the struggle for affordable treatment. He asked delegates to endorse an advocacy agenda for scientific research. This includes research on: microbicides; affordable diagnostics and monitoring tests for HIV/AIDS, TB and other illnesses; opportunistic infections specific to Southern Africa; how and when to use anti-retrovirals; women's health and clinical issues; paediatric HIV/AIDS and vaccine development. TAC and its allies nationally and internationally had won significant price reductions for drugs. This meant that the South African government now had a duty had to plan seriously for the provision of anti-retrovirals to people who needed it. Achmat asked the delegates to approve TAC's demand for a Treatment Plan for HIV/AIDS from government. A Treatment Plan would include proper costing, budgeting and raising the money for medications. He asked delegates to endorse TAC's call for affordable treatment and explained what TAC meant by it: "Why affordable and not free? The state has responsibility to provide free services to all poor people. Working people together with the organisations that represent them can ensure a greater contribution to health care and medicine costs from the private sector. Middle and upper classes can contribute towards the costs of their own health care and help the state subsidise the health care of poor people." In particular, he mentioned the culpability for HIV transmission of the mining industry and the need to ensure that the private sector contributes to the payment for medicines. Achmat asked delegates to ensure that the government's Standard Treatment Guidelines for the Treatment of Opportunistic Infections was implemented and that every clinic had Diflucan (Pfizer's fluconazole). He also launched the TAC simplified version of the national government's Guidelines. TAC called on everyone to ensure that the government had a legal framework to reduce the prices of medicines through transparent pricing, generic competition, compulsory licencing and parallel importation. The government had failed its people on HIV/AIDS but it still had an opportunity to save the situation. TAC had a duty to be both the best partner of government when it does its job -- and the sternest critic when it fails in its duty. TAC is bound only by its respect for the constitutional rights to life and dignity. The full speech will be made available on TAC website. Conference discussed the report and many points in support of the Defiance Campaign, increased state health care expenditure and other issues were raised. Mark Heywood, then introduced guidelines for election of members for the TAC national executive committee. These included independence from drug companies and government. Heywood proposed on behalf of the NEC that in future sectoral representation on the NEC be made up of : (1) organisations of people living with HIV/AIDS; (2) labour organizations, (3) a religious sector, (4) a health care sector, including practitioners of traditional health, (5) a children's sector, (6) NGOs and (7) CBOs/ASOs. The principles guiding the nomination of NEC members included leadership by people openly living with HIV or AIDS; people with a track-record of commitment to activism and sacrifice in taking this struggle forward; gender equity. The National Association of People Living with HIV/AIDS (NAPWA) opposed the principle of independence from government or drug companies because the organisation receives money from both sources. Congress agreed that TAC should not accept money from drug companies or government but that endorsing organisations could. This has always been TAC's position. Congress also endorsed the principle that no office-bearer of TAC can be salaried from an AIDS programme that is funded by drug companies or government. Cosatu, then introduced a resolution on office-bearers of TAC (chairperson, deputy-chairperson, secretary and treasurer). The federation called for the endorsement of Congress, without a contested election, of these office-bearers because they were doing a competent job, to ensure continuity, and to focus on the business of treatment access rather than elections. Cosatu nominated the following office-bearers: chairperson - Zackie Achmat; deputy-chairperson - Sipho Mthathi; secretary - Mark Heywood and treasurer to be co-opted by the Executive. The resolution was seconded by Edna Bokaba representing HOSPERSA and the Federation of Trade Unions of South Africa (FEDUSA). The overwhelming majority of delegates voted in favour of this resolution - it was opposed by three delegates. After lunch eight TAC sectors met for two hours to discuss the Chairperson's report, draft resolutions, and to elect their representatives for confirmation by the Congress. In the afternoon, Dr. David McCoy and Carmen Baez (from the Health System's Trust) made a presentation to Congress on the Transformation of the Health Care System. He outlined the decline in health care spending, the reorganisation based on the principles of Alma-Ata. He also explained the need for a district-based health care system and how the new system had just collapsed because of the new local government structures. One of the most important points made by McCoy was the impact of the private health care system on the public system. Since 1996 more than 30% of nurses had left the public sector to join the private sector - this was having a dramatically negative effect on health care. He challenged TAC to assist in the mobilisation of people to transform the health care system. He suggested that in the Mount Frere District of the Eastern Cape, ARV's could not be used because of the near-collapse of the system itself. There was really good discussion on the address by the Health Systems Trust participants. In the evening, Ezio Santos-Filho conducted a workshop on the lessons of Brazil (his notes will be placed on the TAC Website) and Jonathan Berger conducted a workshop on legal strategies for TAC. These finished at 22h00 and people had to be asked to go to bed. TUESDAY 20TH MARCH 2001 Despite sixty of the delegates suffering a serious outbreak of diarrhoea - this was contained by health care workers and TAC volunteers present (Sue Roberts, Jane Poole, Cati Vawda, Deena Bosch). Chris Hani Baragwanath Hospital staff also assisted allowing the continued and smooth operation of Congress. In the morning Dawn Wilson presented the TAC financial report. The financial report was unanimously adopted by Congress pending the auditors statements due in May 2001. Commissions and Plenary Following the plenary on TAC financial statements, the Congress divided into three Commissions - Building TAC, the Treatment Charter and TAC Constitution. In addition to the sectoral resolutions that will be adopted as TAC's workplan, the most significant agreement by the Congress plenary was that TAC should build the organisation on the basis of individual membership and that organisations, networks, associations support TAC as "Endorsing Organisations". This will combine the need for urgency in action and add the power of mass supporting organisations. There was also a strong demand made for TAC to extend its activities and membership beyond its existing three provinces. The Treatment Charter was adopted with serious changes to structure and language. The Constitution was adopted with key changes around membership and affiliation. Confirmation of the Executive Committee The following Executive Committee members were nominated by their sectors and confirmed by the full Congress: Representatives of organisations of people living with HIV/AIDS Ms Sindiswa Godwana (TAC) Thanduxolo Doro (NAPWA) Representative of Labour Ms Theo Steele (COSATU) Representative of Faith Communities Ms Tsakane Mangwene (South African Catholic Bishops Conference) Representative of Health workers Dr. Grace Ramadi (South African Nursing Council) Representative of Children's organisations Ms Buyisile Mdhlovu (Northern Province) Representative of CBOs/ASOs Ms Verie Johnson (Tafelsig United AIDS Project and Support Group) Representative of NGOs Teboho Kekana (AIDS Law Project) Office-bearers Zackie Achmat (Chairperson) Ms Sipho Mthati (Deputy-Chairperson) Mark Heywood (Secretary) ---- ------- --- --- (Treasurer) Chairpersons of Provinces Sam Lepadi (Gauteng) ---------------- (Western Cape) ----------------- (KZN) Closing Ceremony: Despite three days of meetings, and for many delegates a day of travel, the closing ceremony at 7pm on Tuesday evening was still attended by over 400 people. Judge Edwin Cameron, when he arrived directly from the Supreme Court of Appeal in Bloemfontein, was greeted ecstatically. His address is below. The Congress closed, like it began: with an air of determination and a scent of hope. Despite the sadness and tragedy that surrounds this epidemic, TAC has begun to re-create hope that lives can be saved. Delegates left Soweto with a commitment to continuing this fight with the same degree of intensity and energy for at least another three years. (A full conference report, containing resolutions, guest speeches, key-note presentations, conference documentation, messages of support etc, will be available by June 2001. In the meantime some of the conference documents can be found on the TAC web-site: www.tac.org.za) Acknowledgement: TAC has never organized a conference of this scale before. Special credit must be given to staff at the AIDS Consortium, who worked tirelessly with other volunteers, to ensure that all delegates were registered, that accommodation was properly allocated, conference papers available, complaints attended to. They had to turn scores of people who wanted to attend away because the Lutheran Centre could only cater for 500 people. Thanks also to Cati Vawda and Sister Sue Roberts who contained a potentially serious diarrhea outbreak, and proved that health systems do work. Finally, to Zamo Zwane, the conference organizer, who quietly put the conference together while TAC activists and leaders were engaged in other battles. TAC would also like to acknowledge Norwegian Church Aid and the Southern African Development Fund for assistance with funding. ------------------------------ TREATMENT ACTION CAMPAIGN NATIONAL CONFERENCE Tuesday 20 March 2001 CLOSING CEREMONY ADDRESS by MR JUSTICE EDWIN CAMERON Supreme Court of Appeal 1 It is an honour for me to be invited to address this meeting. The Treatment Action Campaign has been one of the most successful movements in democratic South Africa. It has caught the attention of the world. It has inspired the imagination of those committed to justice and fairness everywhere. And, most importantly, it has given hope. It has given hope to those of us who are living with AIDS and HIV - hope that, through our actions, we can change the world we live in, so that we can continue to live and be part of it. 2 Why has the Treatment Action Campaign caught the attention of the world? It has done so because the injustices it campaigns against are stark and indefensible. It is not immoral to want to live. It is not immoral to want life and health. But it is immoral and wrong to deny life and health to others when you have the means to make it accessible to them. 3 This is the charge that the Treatment Action Campaign levels at the international drug companies. And it is a charge on which well-informed and fair-minded world opinion has found them guilty. 4 I am living with AIDS. I fell terribly sick with all the symptoms of this awful illness three and a half years ago. If I was a poor person, perhaps a mother living in Guguletu, or a worker in Umlazi, or a person in the rural areas of South Africa, I would be dead by now. Within a short time - less than two or three years - the disease would have laid waste my immune system and consumed my body. I would have lost all my strength. My muscles and my limbs would have wasted away. My mouth and throat would have been filled with sores. My stomach and my digestive system would have stopped being able to give me nourishment. I would have died. 5 But I am here tonight, with you. I am talking to you, and I am happy and honoured to be able to do so. I live a full life. I have work and an honoured position under a Constitution in a free country of which I am privileged to be part. 6 Why should I have this when millions of people in Africa and elsewhere in the developing world are sick? Why should I be alive when others have already died? There is no good answer to these questions - and the drug companies' attempts to avoid them stand condemned before the world and before history. 7 It is the Treatment Action Campaign, and your efforts in participating in it, that have claimed world attention for - and demanded government action on - these issues. 8 The Treatment Action Campaign is a South African organization. It was born in South African conditions, and bred amidst South Africa's harsh but inspiring realities. We are a nation that has struggled to find itself. If we have a claim to a history as a nation, it is through our victory against the injustices of apartheid. 9 If we have a claim to a future as a nation, it must be in our commitment to overcome injustice. 10 Injustices in South Africa today are of course many. They include racism, gender oppression, poverty and deep and enduring inequalities. But there is no greater injustice in our country today than the injustice of AIDS. More than four million South Africans face not just inequality or oppression or poverty - but untold suffering and death, unless we deal with this epidemic immediately, and do so practically, ffectively, and with commitment and imagination. 11 That is why your meeting here over these last few days has been so important to our nation. Through your inspiration and commitment and determination, you have given our friends and mothers and fathers and boyfriends and girlfriends and sons and daughters with AIDS hope. 12 But you have done more than this. You have reminded our whole nation of what it can achieve through principled action. You have reminded our nation of its first and most important lesson - that it was born in the struggle against injustice. 13 There are cynical voices today. They say that cheaper medicines will not help. They say that, once we have cheaper medicines, those of us in Africa will still not be able to save ourselves from AIDS. They say that we do not have the skills and the infra-structure and the facilities to distribute and monitor and supervise and assess the treatment and medications necessary tostay alive. 14 We know these kinds of arguments only too well. They are the same arguments that were used to justify white oppression and racial exploitation and racial injustice. These are the same as the kinds of arguments that said that South Africa would not survive under a democratic majority government. These are deceitful arguments. They are designed to justify injustice. They are aimed at preserving the present when we know that the present is intolerable and must be changed. We reject them not only because they are insulting. We reject them because they are false. 15 Our struggle against apartheid triumphed because we rejected fatalism and cynicism and despair. We are willing to meet the future on the same terms. Give us the medications cheaply and affordably. Give us access to medical treatment. We will ensure that our country and our people will respond to the challenge. We will ensure that the four million South Africans, the twenty eight million Africans, the thirty five million poor people in the developing world, will respond to the challenge of accepting and distributing and taking and monitoring life- giving AIDS medications. 16 TAC has achieved an immense amount. It has shown the world the injustice of drug availability and drug pricing. Shamed by the campaign for treatment access, the drug companies have begun to respond. Governments that have been reluctant to act now know that they no longer have any choice in the matter. 17 That means that there is a huge challenge ahead for all of us - for our governments and for our organisations. It is a challenge that you, by your presence at this conference, have accepted. It is a challenge that we here tonight accept. 18 So by being here tonight we reject cynicism and despair. We affirm our own right to live, and to live with health and strength, and to do so with the medical care and treatment necessary for it. We affirm our right to claim treatment access from companies and action from governments. 19 That is the premise on which the Treatment Action Campaign was founded. It is the premise on which we plan to build our future. Let us do it together ********* Dear President Yudof: The Treatment Action Campaign (TAC) is a South African based organisation working towards access to health-care and treatment for people with HIV/AIDS. According to UNAIDS, over 35 million people in the developing world are infected with HIV/AIDS. While people with HIV living in North America and Europe are living longer, healthier lives due to the development of anti-retroviral medicines, most people with HIV in poor countries, including South Africa, face the possibility of early and unnecessary death because they cannot afford to pay for these life-saving treatments. An anti-retroviral medicine, Abacavir, was developed by researchers at the University of Minnesota. It is licensed to Glaxo SmithKline and marketed by this company as Ziagen. Ziagen is likely to be registered in South Africa soon. Pharmaceutical companies have a record of charging exorbitant prices for patented essential medicines, thereby placing them out of reach of most people who need them. Abacavir was developed primarily with public money. It is an accepted principal that public research should serve the public interest above private profit. While Abacavir was developed using US taxpayer money, we are sure that most Americans, who are aware of the profiteering practices of pharmaceutical companies, are appalled by these practices. Furthermore, research is not conducted in a vacuum and the development of all medicines is a global process drawing on results and expertise from universities and researchers throughout the world, including poor countries. We therefore request that the University of Minnesota put Abacavir under an open license so that any manufacturer with enough capacity and expertise can produce it. This will open the market for Abacavir to competition and ensure that the medicine will be sold at a sustainable, affordable price to both the public and private sectors, not only in South Africa, but throughout the world, particularly in developing countries. The struggle for affordable treatments for people with HIV/AIDS is already having to be pursued in the courts in several countries. We urge the University of Minnesota rather to address availability of Abacavir as an urgent ethical imperative, to help put an end to unnecessary deaths. Yours sincerely Zackie Achmat Chairperson of the Treatment Action Campaign Sipho Mthathi Vice-chairperson of the Treatment Action Campaign Mark Heywood Secretary of the Treatment Action Campaign *********