"If Drug Companies call compulsory licence theft, then we will call AIDS profiteering murder": Hearings on HIV/AIDS Treatment Access at the South African Parliament 9 & 10 May 2000 Last week the Parliamentary Committee on Health conducted hearings on HIV/AIDS. Treatment, care and support were the focus of the hearings chaired by Dr. Abe Nkomo. People with HIV/AIDS from across the Cape Peninsula wore their HIV- positive t-shirts and had a strong presence at the hearings. On the first day, Dr. Nono Simelela (Head of the Health Department's HIV/AIDS and STD programme, Dr. Ayanda Ntsaluba, the Director-General and Ms. Mirryena Deeb CEO of the Pharmaceutical Manufacturers Association kicked off. Dr. Simelela outlined the government's proposed HIV/AIDS plan for the next five years. She gave the following figures for the national HIV/AIDS budget for the period 2000-2001. Vaccine Initiative: R5 million SA National AIDS Council: R20 million Mass Media R43 million NGO Funding R20 million Condoms R26 million Life-skills R78.6million Partnerships R6 million Standard treatment guidelines for the treatment of HIV/AIDS opportunistic infections in adults and children were finalised along with those for palliative care. Questioned by opposition MPs, she made it clear that she and the department believed that HIV was the cause of AIDS and that they had never wavered in the implementation of their work. She stated that the results of the Nevirapine trials for the prevention of mother-to-child-transmission would inform the work of the Department. Dr. Simelela was followed by the Director- General Ayanda Ntsaluba defended the international panel of scientists and their mandate. The atmosphere was electrified by the appearance of Mirryena Deeb, CEO of the Pharmaceutical Manufacturer's Association. Her presentation moved the entire audience to tears of boredom. Even her supporters in the National Party yawned. If the drug companies believe that they are God, then Ms Deeb is their avenging angel. Ms. Deeb appeared before the committee as an angel "defending" poor people in the developing world from poverty, hunger and militaristic adventures. Using the jargon of development workers and socialists, Deeb attacked the government for spending money on defence. If her tongue represented an anti- corruption crusader, there would be no corruption in the government. (She failed to mention the corrupt practices uncovered in the private sector involving laboratories and doctors.) Her missionary zeal was almost infectious but we heard it all before. Everyone waited for her to announce that the drug companies and their directors would give all their profits to the Nelson Mandela Children's Fund and apply for amnesty. But we were disappointed. To a question by Dr. Abe Nkomo: "What would you say in the face of such a grave epidemic as AIDS, that we suspend intellectual property rights for a shoprt period, say two to five years, only in developing countries, so that people can have access to medication? What if we leave aside the legal arguments that have sent our lawyers smiling all their way to the bank while millions die of AIDS? Could we do that? No. "The word we prefer for compulsory licencing is theft"—she bellowed. Cheap medicines? South Africa had the cheapest medicines anywhere. According to Deeb--there is no problem other than government inaction. Deeb was accompanied by a scientist from the drug company MSD, who insisted that pharmaceutical companies never received subsidies from government for research and development. She also argued that there were no problems in clinical trials. The next day the parliamentary committee was charmed by Vicky Ehrich, Corporate Affairs Director of Glaxo Wellcome who did not waste time outlining the programmes of AIDS NGOs that they funded. NGO work was appropriated to show that Glaxo Wellcome were doing a good job. She explained how Glaxo Wellcome was addressing the lack of clinical HIV/AIDS knowledge among health workers across the country. When questioned on the number of people involved in this initiative, she stated that they employed four nurses across the country. She pointed out that the state buys R2 million worth of AZT from them every year for needlestick injuries. The Treatment Action Campaign (TAC) submission was made by seven people. Six of the people live openly with HIV. They spoke of discrimination in the health care system, lack of treatment access, stigma, the need for treatment guidelines, the need for government action, the need for AZT or Nevirapine in mother-to-child- transmission prevention programmes and called for an increase in the health budget. Busisiwe Maqungo spoke of her child who died. Cape Times reporter Judith Soal summarised it as follows:"Busisiwe Maqungo believes her baby daughter died from prejudice, not Aids." This young mother and AIDS activist says she took her child who had HIV to the doctors when she was ill because she hoped that they would care and help. Instead, she had to beg for medicine just to bring the child's fever down. Her baby died. Busisizwe asked the government on behalf of the TAC and her child who had died to implement a programme of AZT or Nevirapine to reduce mother-to-child transmission and to make treatments available for children with HIV/AIDS. Christopher Monaka told the Parliamentary Committee that he has thrush. Conradie hospital did not have Diflucan because of the costs and nothing else would help his thrush. He spoke of the Pfizer campaign and explained that while the donation for cryptococcal menigitis was welcome, most people with thrush were excluded. Health care workers frustrated at lack of resources were not treating people with HIV/AIDS with dignity. Christopher asked the government to ensure that Pfizer reduce the price of Diflucan to less than R4.00 per 200mg capsule before 1 July 2000. "Every day many people died because they did not have access to the drug." Sindiswa Godwana said that she was unemployed. The majority of people in South Africa were poor. In the hospitals people were not even receiving multivitamins. She gets them from her support group but most support groups don't even have access to vitamins. She told the Parliamentary Committee that they needed to ensure that opportunistic infections were properly treated and anti-retroviral drugs were made available. She argued that this would be possible if government forced drug companies to lower their prices. Why was the government waiting? Fagmida Miller explained that she was on a clinical trial. Her viral load was undetectable and her health was good. This was the only way that she could get treated for HIV. She asked the government to ensure that clinical trials are properly conducted. Every adult and child with HIV/AIDS should have access to treatment. No-one should be excluded because of poverty or for any other reason. Noriri Lamati informed the Parliamentary Committee how people with HIV were treated in the rural hospitals in the Eastern cape and in areas such as Grahamstown. She explained that when health workers discivered she had HIV—she could not access treatment for anything. Even if a medical problem was not related to HIV—they would deny her treatment because she had HIV and they said: "You know there is nothing we can do for people with HIV. They just die." When she came to Groote Schuur in Cape Town where she was treated for TB, Noriri asked a doctor about anti-retrovirals. The doctor would not tell her anything. She asked Parliament to ensure that people with HIV got equal access to health care and that the price of medicines came down. Siphokazi Mthathi explained the work and support of the TAC. People would not come forward to be tested if there was no benefit. Treatment was a key component of prevention. She told the committee that TAC was proudly independent and would not accept money from the drug companies or government. Knowledge of HIV/AIDS was limited to ABC--A[bstinence], B[e faithful], C[ondomise] but people needed to know about care, treatment, science and medicine. Neither people with HIV, nor health workers had access to medical information. She asked government to implement the standard treatment guidelines as a matter of urgency. In addition, treatment literacy was a priority for the TAC. This meant first and foremost a clear understanding by patients of illnesses and their medications. It also meant that health care workers should receive appropriate training and re- training. Zackie Achmat asked the Committee to issue a regulation to all health care workers to ensure the appropriate and equal treatment of people with HIV/AIDS. He gave a list of drugs needed for opportunistic infections to the committee and asked for their availability, cost and all patent information to be made available to TAC within six weeks. He also provided the committee with a list of anti-retrovirals that TAC wanted the government to consider as candidate drugs for compulsory licencing or parallel importing, if the drug companies failed to reduce the price to the same levels as generic prices. He drew the Committee's attention to the blockade of the Pfizer Viagra factory by Act-Up Paris. Anticipating the announcement by the five drug companies, the TAC welcopmed all price reductions but condemned any move to tie the hands of governments to enhance generic competition. TAC raised concern with the R20 million allocated to SANAC without a clear explanation on what the money would be spent. Toby Kasper made a hard-hitting submission on behalf of MSF by comparing prices and profits of selected ant-retrovirals. Excessive pharmaceutical profits prevented government planning and diverted resources that should be used to expand health coverage into the pockets of drug companies. Kasper drew the attention of the Portfolio Committee to the eaxample of Brazil, where he said anti-retrovirals in triple therapy was available at significantly lower prices than the lowest price offered by companies such as Glaxo-Wellcome and Boehringer Ingelheim. Cosatu supported the TAC and MSF submission and went further to address the issues of poverty and ensuring that everyone in the country had a basic income support grant to alleviate poverty. The hearings were set to continue on Tuesday 16 May 2000. Zackie Achmat