Realpolitik of AIDS

The South Asian response to AIDS is still mired in denial, ignorance and wishful thinking. But with more than a million AIDS orphans in the region, it is time the problem is tackled head-on. Look to Uganda for the answers.

"…Extreme poverty is the world's biggest killer and the greatest cause of ill-health and suffering across the globe," said South African President Thabo Mbeki in his opening address to the 13th global AIDS conference in Durban in July. Even as he was speaking, a number of people began walking out.

South Africa is home to the largest number of people living with HIV/AIDS in the world—a staggering 4.2 million.

"Some in our common world consider the questions I and the rest of our government have raised around the HIV-AIDS issue…as akin to grave criminal and genocidal misconduct. What I hear said repeatedly, stridently, angrily, is—do not ask any questions!"

The president went on to say that the repeated assaults of a large number of diseases on the immune systems of Africans because of the endemic poverty, could have led to the collapse of the systems. And that led him to question if all the ills of Africa could be blamed on a single virus.

President Mbeki raised global ire when he set up a commission to probe whether safe sex, condoms and anti-retrovirals (ARVs), were the only answer to the health crisis confronting his country. Most people surmised that he was questioning whether HIV in fact caused AIDS. The president took considerable pains to explain that he had in no way pulled back from strategising and implementing a full-fledged programme to tackle the disease in the conventional way.

But no one, especially in the Western media, seemed in a forgiving mood. The president was panned for diverting energies from the fight against AIDS by raising unnecessary questions, and for not providing South Africans access to anti-retroviral drugs for treatment.

Indeed, the whole debate during the Durban conference seemed to turn to the issue of access to treatment. It wasn't so much access to care and treatment of "opportunistic infections" or prophylaxis (preventive treatment), but access to ARVs that was taken as the core concern. Before the grand opening ceremony, Winnie Mandela and other celebrities led a march to demand access to treatment. Justice Edward Cameron of South Africa delivered the prestigious Johnathan Mann memorial lecture at the opening plenary to repeated applause. Justice Cameron is a revered public figure who came out into the open about his HIV positive status, and actively began campaigning for access to treatment for the resource-poor. He stressed that nine-tenths of the people living with HIV/AIDS were in poor countries. "Given the epidemic's two most significant changes, in demographics and in medical science, it must surely be that the most urgent challenge it offers to us is to find constructive ways of bringing these life-saving drugs to those millions of people whose lives can be spared by them," he said.

The ARVs act against HIV at different stages of its lifecycle, inhibiting its reproduction and boosting CD4 or immune cell counts. They are taken in a combination of three or more drugs of two different types, and have dramatically improved the quality of life of those suffering from AIDS in the developed world. In fact, a lot many scientists have begun talking of AIDS as a manageable disease like diabetes which can be brought under control through drugs.

But the drugs for AIDS are so very expensive, more so because the patent on most has not expired. And they require rigorous monitoring while being administered; viral load, or the measure of the virus circulating in the body, and CD4 counts, have to be taken constantly to monitor dosage. Patients have to take a number of pills, maybe up to 30 a day for the rest of their lives since viral loads shoot up and C4 cells go down once the medication is stopped. The drugs are also highly toxic and carry many side effects, the long-term ones not even known. Patients tend to develop resistance to some of the drugs and the combination may have to be changed from time to time to remain effective. Tests to detect resistance can cost between USD 400 to 800.

It is easy to see that these drugs are beyond the means of most Africans or South Asians. But it simply is not just about the lack of access to drugs, it is also overwhelmingly about the absence of health infrastructure to deliver and monitor the drugs. For instance, while USD 1500 is the expenditure on health per person in Northern America and Europe, in some Asian and African countries, the spending is less than USD 20 per person. Structural adjustment policies advocated by the World Bank have further squeezed expenditure on public health in most developing nations.

While the industrialised world boasts of 200-300 doctors and 500-1000 nurses per 100,000 people, that figure for South Asia, excluding India, is 33 doctors and 24 nurses. While France and the US have 8.7 and 4 beds per 1000 people respectively, Bangladesh has only 0.3 beds per 1000 people. To come up to even 10 percent of the money spent on the health of each person by countries in the industrialised world, Bangladesh would have to raise a sum of USD 13 billion annually, a figure equivalent to 29 percent of the country's GNP.

It is only through this kind of an investment that access to ARVs through the public health system would become feasible, although this cannot pay for the drugs themselves. Increased expenditure on the public health system would obviously help combat a host of other diseases, which would then mean a reduction in the transmission of HIV. For instance, decreasing sexually transmitted infections would cut down on HIV infection. It would also help prevent HIV infected persons from contracting a number of other opportunistic infections once they are re-moved from the environment.

The cost of ARVs varies from country to country, depending on patent laws, import duties, registration costs, taxes, distribution costs and dispensing fees. While costs in South Africa are prohibitive because of patent laws and value added taxes, in India they are much cheaper because the Intellectual Property Rights of the WTO do not come into operation here for another four to five years, and the Indian pharmaceutical industry is manufacturing, packaging and even exporting the drugs. In India, the indigenous manufacturer Cipla says the basic triple therapy will soon be available for USD 2500 a year as opposed to USD 9950 in the United States. But the costs are still prohibitive for a country where the per capita income is a mere USD 370 per year.

Poverty and AIDS

AIDS in South Asia is a widespread phenomenon. In Sri Lanka, it is the women migrant workers who are the most affected. In Bangladesh, pervasive poverty and unemployment, frequent natural disasters, high mobility and migration, the low socio-economic status of women and their trafficking, commercial blood donation and the high prevalence of STDs, are recognised by the UNDP as factors favouring the spread of HIV in that country.

War and refugee movements in Afghanistan, poverty, trafficking, migration, and the secondary status of women in Nepal, and poverty, income and gender disparities and high rates of sexually transmitted diseases are recognised as predisposing factors in India in the UNDP report on AIDS in South and South West Asia, 1999.

The common thread everywhere turns out to be the lack of resources and under-development in each of these countries. This brings us back to President Mbeki's opening address where he repeatedly stressed the links between poverty and not only with AIDS, but a host of other diseases, and the fact that a 4. public health crisis is facing most of us in the developing world.

Given all these factors, where do South Asians stand in the global debate on AIDS? The African National Congress government in South Africa has clearly laid down that it is not going to provide ARVs through its public health system for a few, till it can afford to provide them for all its people. The stance does not seem at all remiss when seen against the country's struggle for equity in the apartheid days.

Nono Similela, chief director of the South African HIV/AIDS programme, says the drug regimens require doses on full stomachs with clean drinking water. Even these are not available in most parts of Africa and South Asia. Defending her president, she says that while AIDS activists say no African leader has political commitment, they refuse to listen to anyone who has a different perspective to offer.

South Africa's strategic plan for HIV/AIDS and STD (for the period 2000-2005), concentrates on bringing all sections of the people together in a massive effort at providing prevention and care. Meanwhile, the country is also grappling with tremendous social and political issues post-apartheid. In an already divided society, AIDS has managed to create one more rift. The clamour for access to ARVs has generated very emotional responses for, and against, the government's stance. The pharmaceutical industry also has a key role in this contentious debate since it has too much at stake.

In South Asia as yet, there is no clamour for ARVs. In fact, the stigma attached to the disease is still so strong, that there are few voices that dare to call for access to treatment. It is true that the right to good health, treatment and care, is a basic human right, and it is criminal to deny people access to drugs because of lack of resources. But till such time as South Asia can work itself out of the resource crunch, where is it to look for answers?

North of South Africa to Uganda, it would seem. A country with as poor a resource base as most of South Asia, Uganda has managed to bring down its prevalence rates from a remarkably high 30 percent to 10 percent between 1992 and 1996.

The Uganda lesson

Denial, ignorance and plain wishful thinking still characterise a lot of South Asian responses to the AIDS pandemic. The result is often an ineffectual, piecemeal and fragmented approach that only skirts the issue without tack-ling it head on. On the other hand, a relative success story like Uganda is characterised by strong political commitment, a coherent and integrated approach, and an openness that al-lows discussion on key issues like sex and sexuality.

The Ugandan government's first official response to the epidemic was in 1986, just about when the Indian government also woke up to AIDS. The then health minister, Dr. Rukahana Rugunda, told a shocked World Health Assembly in Geneva that Uganda had a problem with AIDS at a time when the disease was associated with homosexuality, and stigma. Like India, Uganda too set up an AIDS Control Programme in the Ministry of Health in 1986. But they soon realised that the consequences of the epidemic went far beyond merely health. In 1992, they set up the Uganda AIDS Commission (UAC) by a statute of Parliament and placed it directly under the office of the president.

President Yoweri Museveni spoke about the problem from every platform, increasing awareness and reducing the stigma attached to the disease. In 1994, the UAC came up with the Multi Sectoral Approach (MASA) where programmes for AIDS control were created in 12 line ministries. NG0s, CB0s, the private sector, religious leaders and a host of other players were involved in the fight against HIV/AIDS.

Young people were provided counselling and support through youth centres that sought to address queries on sex in an open and frank manner. Two path-breaking publications for very young children and teenagers—Young Talk and Straight Talk—were started to provide accurate information about reproductive health issues. These are read by more than one million children and adolescents. They talk about the physical and emotional changes that take place during adolescence, sexuality and safe sex, including abstinence, STDs, including HIV and AIDS, menstruation, pregnancy, family planning and life skills.

The Straight Talk Foundation also organises visits to schools by doctors, nurses, midwives and counsellors to talk about these issues, while also producing popular radio programmes on the subject. Voluntary Counselling and Testing (VCT) has been promoted in a big way and community initiatives have led to the forma¬tion of a number of care and support organisations, the best known of which is TASO (The AIDS Support Organisation). It has eight centres around the country and offers services in testing, counselling, treatment, care, and emotional, medical and social support.

Another such organisation is NACOWLA or the National Council for Women Living with AIDS, which provides a strong emotional and financial support network for affected women through self-help schemes. Among their more touching schemes is the one where mothers get together with their children to write "memory books" to record their family history and important moments, so that the family legacy re-mains with the children once their parents are no more.

Uganda has at least two million AIDS orphans. They are categorised as children under the age of 15 who have lost either their mother or both parents to AIDS. At first there were homes for AIDS orphans, but now the Ugandan policy is to trace the relatives of as many children and send them to live with their extended families. The government provides financial support for their education and upkeep. However, there are still child-headed households in the country, and some homes for orphans still remain, as there are many whose relatives could not be tracked down. But at least the government has a policy on the issue, and is trying hard to deal with this very difficult problem.

By contrast, at a post Durban conference in New Delhi, a top official from one of India's most affected states, stood up and said there were as yet no children affected by the pandemic in our part of the world. There are 5.6 million AIDS orphans in South and South East Asia, according to the latest UNAIDS figures.

In Uganda, there are public figures who have helped in fighting the taboo associated with the ailment. The famous singer Phil Lutaaya, who declared himself HIV positive and then campaigned against the illness through his music, was responsible for raising awareness among the youth in a very big way. The dynamic war hero, Major Rubaramira Ruranga, tours the country exhorting soldiers to avoid the infection, and offering hope to those who have it. Major Ruranga has been HIV positive since 1989, and has started the National Guidance and Empowerment Network (NGEN).

Studies in Uganda have shown that there has been a discernible behaviour change as a result of such intensive campaigning. Two in three persons in the country are able to cite at least two acceptable ways of protection against HIV, the proportion of people who have ever used a condom has risen from 7 percent in 1989 to 42 percent in 1995, at least 57 percent of women and 64 percent of men have restricted their number of sexual partners, and the median age for the first sexual encounter in girls rose to 16 years in 1995 compared to 15 years in 1989.

Prevalence rates, however, have been stagnating at 10 percent for some time now. The Ugandan government hopes to tackle it by increasing the resource allocation for HIV/AIDS, further integrating the national AIDS policy with other initiatives like the country's Poverty Eradication Action Plan (PEAP), and improving monitoring and evaluation networks. It is also looking at decentralising power to local governments to formulate their own action plans, providing prompt treatment for opportunistic infections, increasing information dissemination to 10-24 year olds, and encouraging regional initiatives.

Professor J Rwomushana, Coordinator Health and Research at the UAC says Uganda prefers to concentrate on its efforts in developing life skills and encouraging behaviour change. It cannot afford to divert attention to a campaign for access to ARVs, since they are well aware that the government cannot afford the drugs right now. Uganda's success story stems in large measure from the fact that the whole country has realised the magnitude of the problem, and has come forward to combat it. This flows from the fact that there is no single person you can talk to in Uganda whose family has not been directly or indirectly affected by AIDS. The question is, can South Asia afford to wait till things come to such a pass?