The New Straits Times, June 17, 2001
By Professor Dzulkifli Abdul Razak
ON JUNE 1 at 5.40am, anti-AIDS advocacy icon Xolani Nkosi passed away. He was barely 12. An AIDS victim from birth Nkosi Johnston as he was better known, was named after his foster family. He lost his natural mother to the same disease in 1997.
Nkosi came to prominence during the international AIDS conference last year in Durban when he advocated the need for anti-AIDS drugs in South Africa and across the world in combating the disease.
More specifically, Nkosi succeeded in focusing attention on the fate of millions of innocent children identified as HIV-positive due to their biological mother contracting AIDS.
In South Africa alone, more than 70,000 babies are expected to be born HIV-positive. And their future remains bleak as ever. When he died Nkosi weighed less than 10 kg.
In his final days, he was unable to talk or control his bodily functions. He had been in semi-comatose state since January when his brain was attacked by the AIDS virus.
Yet Nkosi is considered lucky by some for being able to put up a fight long enough to be regarded as "South Africa's longest surviving child born HIV-positive".
Few will have the attention enjoyed by Nkosi; most will suffer until they fade away for lack of appropriate treatment or because they can't afford it.
Children by nature are most vulnerable to all forms of disease, more so those living in the poorer countries. But this situation is not entirely new. It existed for decades before the AIDS tragedy.
It is only that then there was no Nkosi to send a message that would capture the world's sympathy and concern. Thousands died in oblivion of "straightforward" treatable diseases such as diarrhoea and acute respiratory infections.
The reason is in part similar. Appropriate drugs are not affordable, though they are nowhere near as expensive as antiAIDS drugs.
It was this that led the World Health Organisation to formulate the Revised Drug Strategy. It takes note of member states' concerns that millions in the world today are deprived of drug treatment, some due to the impact of drug pricing. A number of studies so far seem to suggest wide variations in retail prices of "essential" drugs (that is, drugs required by the larger majority of the population) among countries.
Some point to the fact that several essential drugs have been priced higher in developing countries than in the developed ones. Asia is no exception.
It has been argued that these variations are due to the industry's arbitrary price setting to maximise profits. In many instances the way drug prices are set lacks transparency. This argument is now reinforced by the way companies, in a flash, slashed the price of anti-AIDS drugs after being pressured by the international community.
This says something about the huge margins drug companies routinely make without being sensitive to age, gender, sociocultural or geopolitical differences.
And if the patent periods given by some international "treaties" are taken into account, some of these companies can be and are financially stronger than many developing countries.
But now developed countries too are raising similar "pricey" questions. In the US, reportedly, at least 40 state legislatures are debating measures to control drug costs.
Of course, this will be an uphill battle considering that drug companies are said to have poured "US$800 million (RM3.04 billion) into last year's Congressional campaign", a record for any industry.
Thus, the issue of accessibility and equity of drugs must continue to be articulated with passion. As mentioned in the People's Charter for Health adopted during the People's Health Assembly last year in Bangladesh: "Neo-liberal political and economic policies are made by a small group of powerful governments, and by international institutions such as the World Bank, the International Monetary Fund and the World Trade Organisation.
"These policies, together with the unregulated activities of transnational corporations, have severe effects on the lives and livelihoods, health and well being of people in both the North and the South." This pharmaceutical apartheid has hampered the fight to combat even the commonest of diseases. And here is where we must pay tribute to Nkosi, for drawing the world's attention to a cruel injustice.
To quote Nkosi's grandmother, Ruth Khumalo: "He could not be like the other children in the world. But maybe everybody can read a lesson. He was a small boy, but a brave one."
Recommended website: http://www.nkosi.iafrica.com
