What Happened in Durban? A South African Perspective

Durban, South Africa's port city on the Indian Ocean, sits at the epicenter of one of the world's largest and most complex HIV epidemics. Like South Africa's other major cities, it encompasses a mix of the first and the third world. Interspersed among fine hotels, the huge and modern International Conference Center and a wonderful array of gardens, restaurants and shopping malls, one finds hundreds of people living on the street, many of them sleeping under plastic covers on the Durban Beach front. Just a short drive from the city center, one comes across the densely populated townships, their underlying poverty deceptively disguised by the omnipresent sub-tropical vegetation of Kwazulu-Natal, notorious for being, until recently, the venue of some of South Africa's most violent political clashes.

The 13th International AIDS Conference, which took place in Durban in July, dominated the main pages of the country's newspapers and the prime slots on TV, an indication that South Africans are becoming increasingly aware of the damage this disease, and the lack of an appropriate response to it, is causing to the social and economic fabric of this society.

The enormous cost of the entrance tickets to the conference prevented many South Africans from attending. A ticket cost approximately $700, an amount exceeding the monthly salaries of even many middle-class South Africans. There were three groups of South Africans who managed to get tickets: (1) those who knew the right people, (2) the incredibly wealthy and (3) those with access to a high-quality color photocopying machine, useful for making fraudulent tickets. The inappropriate opulence of the event was evident at the opening ceremony, which was punctuated with dance and song routines more suitable for the gala opening of the Olympics. It was concluded with a fireworks display. It is perhaps not entirely ironic that those denied access to treatment were also denied access to the conference and the fireworks show.

Despite the expense and inappropriate celebratory atmosphere of the opening ceremony, the conference had many memorable events, including speeches by Judge Edwin Cameron, a judge on the South African High Court, and Winnie Mandela, ex-wife of the country's first democratic president and one of the most popular political figures in the country, who both criticized the pharmaceutical industry for its role in worsening the HIV epidemic. Both urged the South African government to lead the fight to bring affordable HIV medication to South Africa. A speech by Nelson Mandela later called for a mother-to-child-transmission prevention program.

Other memorable events included a free satellite conference, organized by Doctors without Borders and the Treatment Action Campaign, on access to treatment. The satellite meeting was attended by over a thousand people from around the world, as well as many sectors of South African society. Other important events included an overwhelming consensus among diverse scientists, academics, governments and laypeople that affirmed the causal link between HIV and AIDS, and clear findings from both Uganda and South Africa on the efficacy of both AZT and nevirapine (NVP) as prevention in mother-to-child transmission of HIV.

However, the Global March for Treatment Access, organized by the Treatment Action Campaign and the Health-GAP Coalition, must be considered the highlight of the conference. Thousands of people, most of them economically marginalized, working-class South Africans, marched through the streets of Durban, demanding access to affordable and decent health care. It was a remarkable demonstration of power by ordinary South Africans and represented the mobilization of civil society in a maturing democracy. The international contingent at the march, which comprised many activists from developing countries, emphasized the global nature of HIV and the need to form worldwide alliances to overcome it.

The march culminated in the handing over a memorandum to representatives of UNAIDS, the South African government and the organizers of the International AIDS Conference. Conspicuous by their absence were Harvey Bale, chairperson of the International Federation of Pharmaceutical Manufacturers Associations, and Sandra Thurman, director of the United States Office of National AIDS Policy, who were both invited to receive the memorandum. The world's media reported extensively on the march and its aims, which contributed to ensuring that access to treatment became one of the primary focuses of discussion during the remainder of the conference.

The 1999 annual survey of women attending public antenatal clinics indicated a sero-prevalence rate of 22.8 percent. Extrapolating from this survey, the government estimates that 4.2 million South Africans have HIV. The seriousness of the HIV epidemic in South Africa and the potential catastrophe resulting from it cannot be doubted; the Durban marchers deserve to be answered. The problems affecting treatment access in South Africa need to be analyzed and resolved. There are four major obstacles to treatment access: (1) the high price of medication due to pharmaceutical company profiteering, (2) government intransigence, (3) health-care infrastructure issues and (4) lack of knowledge concerning HIV at a grassroots level.

High Prices of Medication Because of Profiteering

The price of medication is the biggest obstacle to treatment access. This writer recently calculated that the cheapest amount for which a South African could legally obtain triple-drug antiretroviral therapy is over $285 per month. More than 50% of South African households have an income of less than $200 per month. Even a middle-class South African household would struggle to cover the price of treatment of one person. Taking triple-drug therapy is inconceivable to all but a small minority of people, who are either very wealthy or on a drug trial.

The cost of many opportunistic infection drugs are also exorbitant. Systemic thrush and cryptococcal meningitis are two common opportunistic infections associated with HIV. Both are often fatal if left untreated. Pfizer sells fluconazole to the South African government for approximately $4 per 200mg pill. Usually two pills are needed a day. When one considers that cryptococcal meningitis patients need to take fluconazole for the rest of their lives, the inaccessibility of the drug becomes apparent.

Pharmaceutical companies, like Pfizer, are profiteering from life-saving medications. High-quality generic fluconazole is available from Thailand (and other countries) at less than $0.29 per 200mg pill, but Pfizer is using its patent on the drug in South Africa to monopolize the market and prevent generic competition. Almost every nucleoside and non-nucleoside antiretroviral drug is also available cheaper from generic manufacturers, though the price differential on fluconazole is a particularly staggering example. Through long-running, ongoing legal action by the pharmaceutical industry and bullying tactics by the US and EU governments, the South African government has been intimidated out of its attempts to use legislation which would allow it to grant compulsory licenses for the manufacture or importation of these essential medications. Therefore, these cheaper drugs are unavailable to the vast majority of the South African public.

The main thrust of TAC's campaign has been to highlight profiteering via patent abuse of pharmaceutical companies. Earlier this year, a campaign was launched to get Pfizer to drop the price of fluconazole to less than $0.60 per tablet or to grant a voluntary license to import the drug from a generic manufacturer. Pfizer responded by offering to donate fluconazole for free to patients with cryptococcal meningitis (systemic thrush is excluded), but despite months of negotiations with the government, the offer has still not gone into effect.

It is against this background that TAC has decided to take legal action against Pfizer on the grounds of abuse of patent and to begin a defiance campaign by importing high-quality generic fluconazole into South Africa, which TAC is distributing free to doctors and patients. This is being done on humanitarian grounds in order to save human lives. Many TAC volunteers are in urgent need of fluconazole and many doctors have indicated that they are in dire need of the drug for their patients.

Government Intransigence

The South African government has implemented an excellent legal framework for dealing with HIV/AIDS. It has also invested substantially in prevention campaigns and condom distribution. However, in other respects their response has been less than adequate. Besides the well-publicized flirtations of President Mbeki with AIDS denialists (which undermines the prevention campaign), the government is doing its utmost to avoid implementing a mother-to-child transmission prevention (MTCTP) program. An mtctp program using nevirapine (NVP) or AZT would prevent approximately 14,000 babies a year from contracting HIV. Despite the success of a pilot program in Khayelitsha (Cape Town), the recently completed SAINT trials (which tested the efficacy of NVP) and the results of trials that have taken place in Botswana, Kenya and Uganda, the government continues to use red herrings, such as the resistance profile of NVP and transmission of the virus through breast-feeding, to avoid fulfilling its responsibilities. A recent study at the University of Cape Town demonstrated that the government would save money by implementing an mtctp program. The cost of treating HIV children far exceeds the fraction (less than 1%) of the health budget it would require to prevent them from contracting the virus.

TAC is mobilizing a campaign, comprising protests, pamphleteering, educational workshops and legal action to ensure that a countrywide MTCTP program is implemented. The legal case for compelling the government to implement MTCTP is based on a number of constitutional rights upon which the government's current stance is infringing: (1) the right to healthcare, (2) the best interests of the child, (3) the right to equality and dignity and (4) the right of a woman to make reproductive choices.

Health-care Infrastructure

There is currently a two-tier health-care system in South Africa -- one private and one public. Private healthcare in South Africa is generally excellent and very profitable, but the cost ensures that a minority of people has access to it. Service in the public health-care system is uneven with many centers of excellence and many appalling wards and institutions. Many rural areas are under-serviced, and often lack access to clean water.

But it is not only the rural areas. TAC volunteers recently visited a volunteer sick with cryptococcal meningitis in a ward in King Edward Hospital in Durban, which has a reputation of being one of the country's finest hospitals. They were appalled to find the walls of an overcrowded ward smeared in vomit and the floors damp with urine, a situation that was remedied after a complaint was laid. This is the result of a system where hospitals and clinics are understaffed. Health-care workers are underpaid and have become demoralized by visibly increasing death rates often due to a lack of access to essential medication.

The situation is definitely not hopeless. There has been some investment into the primary health-care infrastructure by the post-apartheid government. Tuberculosis treatment is free, widely available and implemented using the Directly Observed Treatment Short Course program. South Africa has been recognized by the World Health Organization as one of the countries making progress in tuberculosis control.

Interestingly, apologists for the pharmaceutical industry often argue that infrastructure is the biggest obstacle to access in South Africa and that the conditions do not exist for ensuring adherence to anti-retroviral drug regimens. However, they fail to point out that adherence is a problem in the US and the EU as well, and that the same adherence argument could be applied to TB treatment in South Africa. Yet, no one would suggest that triple-drug therapy should be stopped in the developed world or that TB treatment should not be given in South Africa. There is no empirical evidence that socioeconomic status is correlated with adherence.

Addressing infrastructure problems is difficult and will require substantial investment by the government, as well as a greater contribution by private health-care users to the public health-care system. But, lowering drug prices will provide much needed funds. Campaigning for conditional third-world debt relief linked to the development of health-care infrastructure and other essential social services might be a strategy worth considering in this regard. The South African government is considering making a $200 million loan from the World Bank to improve the health-care infrastructure. This is a fraction of the $6.8 billion that South Africa spends on servicing its debt, most of this incurred by the apartheid government.

Lack of Knowledge/Social Stigma

Extreme examples of the social consequences of the stigma against HIV in South Africa include the murders of Mpho Motloung and Gugu Dlamini. Ms. Motloung was murdered by her husband when both went for their HIV test results. Ms. Dlamini, an openly HIV-positive advocate, was stoned to death by a mob. Fear and ignorance are the catalysts for such brutal behavior. This situation is exacerbated by the continuous message coming through in both the media and the government prevention campaign that HIV is a death sentence, a view strongly opposed by TAC. Not only has this message resulted in much misery (and abuse of women as in the Motloung and Dlamini cases), but it also discourages people from having HIV tests or disclosing their HIV status. It also undermines prevention because people with HIV are discriminated against and believe their situation is hopeless.

TAC is combating this stigma in a number of ways. At the Durban March, the marchers wore t-shirts with the words "HIV Positive." The HIV Positive t-shirt was first used to protest the death of Gugu Dlamini and has since become a symbol of openness and activism. Many TAC volunteers are open about their HIV status and are spreading the message that HIV does not imply a death sentence.

Treatment Knowledge

Many South Africans do not realize that HIV can be treated or that their health can be improved through lifestyle changes. TAC holds regular treatment workshops in townships. These workshops involve educating people about how to live healthier with the disease and that there are treatments that can help them live much longer, if the prices of these treatments could be brought down. However, the organization does not have the money to implement this on a large enough scale. Government, civil society and the private sector should be investing more resources into treatment education.

TAC has received many requests by people living in the United States who wish to know how they can help. There are many ways. Organizations like Health-GAP and the Consumer Project on Technology have worked on campaigns and issues with TAC. The Treatment Action Group has assisted us by providing us with technical information on treatment. The European and US media often points out the negative role of the South African government in the epidemic, justifiably so, but very little is said about the roles of the European and US governments as well as the pharmaceutical industry. Only citizens of the EU and the US can change this inequity in coverage. It is worth organizing campaigns to highlight the negative role of the pharmaceutical industry in the epidemic. Too few people in the world's developed countries are aware of the misery caused by some of their institutions and corporations. Let us work together to change this and to overcome the health gap.

Back to the GMHC Treatment Issues September/October 2000 contents page.