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X-treme Neglect

Winstone Zulu survived tuberculosis, but his four brothers did not. In this essay he points out, in the most personal terms, that placing the diseases of the poor at the bottom of the list of global priorities is as risky as it is inhumane.

In late November 1990, two of my elder brothers were lying gravely ill in Zambian hospitals.  Christopher, then aged 33, was with me at the University Teaching Hospital in Lusaka, while Erasmus was at Liteta District Hospital with my elder sister, Matildah.  They both had HIV-related tuberculosis.  Two weeks later, both were dead.  Six years later, my eldest brother died of HIV-related TB.  He was 43.  And my young brother Dan, 27, died of the disease in March 2003.

In just a dozen years I lost four brothers from a curable disease.  In the 1990s, the TB program in Zambia was a mess.  There were drug shortages every year, such that when I myself had TB in 1996, I relied on a colonel I knew in the Zambian Army to travel to South Africa and get me a supply.  My brothers did not have that connection and died slow, painful and debilitating deaths — all for lack of access to drugs that even today cost less than $20 for the full six-month treatment.

The loss of my brothers did not make the news. They were not lead singers in rock bands like Freddie Mercury or movie stars like Rock Hudson. They were poor, black and African, non-entities whose lives, like so many lives in sub-Saharan Africa, were viewed as expendable. With every death, the family and neighbours wept with us in the usual Zambian way and escorted us to the graveyard where we buried my siblings.  End of story.

But then, maybe not.  When Dan started his TB treatment in the fall of 2002, there was the usual shortage in Lusaka; this time it was the essential drug INH that was in short supply.  The clinic gave Dan the drugs that were available rather than the optimal treatment required.  This is typical example of how apathy towards the diseases of poor people can breed drug resistance: bad TB treatment is worse than no treatment at all. Dan’s experience illustrates a common problem in many countries of Africa, where the World Health Organization estimates that a third of people who need TB treatment cannot access the drugs. The results of failing to provide high-quality first-line drugs?  Two new strains of TB: MDR, or Multidrug Resistant and XDR, Extreme Drug Resistance.  

All the fuss kicked up when an American lawyer with these new strains traveled to Europe and elsewhere would never have come to pass if people like my young brother Dan had received proper and adequate treatment.  TB drug resistance is entirely a man-made phenomenon.  

At the last conference of the International Union Against Tuberculosis and Lung Disease in Cape Town, I was given a chance to speak at a press conference.  I bemoaned the lack of progress in new drugs, new diagnostics and vaccines. A gentleman from the Foundation for Innovative New Diagnostics announced that by July 2008, there will be new, faster and more effective ways of detecting TB.  That was good news.  Two women, one from the vaccine and one from the drug research field, reported that they expect new products around 2015 and 2012, respectively.  Although I am aware that short-cuts can be dangerous, I could not help thinking that each year more than 1.5 million people die of the disease, which means that by the time we have new drugs — fours years from now — 6,400, 000 additional lives will have been lost.  I remember how trial AIDS drugs were rushed through the red tape and fast-tracked to get us where we are today. True, some people suffered toxicity as a result of AIDS drug trials.  But we all looked forward to the day when science would figure out what worked and what did not. 

At the Cape Town conference, I heard that philanthropic entities are now putting more money into TB research than governments, and I felt: that is insane.  Not after all the promises of 2001 at the United Nations General Assembly’s Special Session on AIDS!  

I am always amazed at how slowly the world has reacted to a disease that kills more than half a million people every year, a disease that is not only preventable but curable, and one of the few for which an exact plan exists that could make this killer history within our lifetimes.  Perhaps XDR TB would have to kill Bush or Sarkozy for the world to act more quickly.  Is there no other way to speed up the process of developing new drugs and a vaccine? Is there no way to accelerate the projected 2012 and 2015 target dates, considering the number of lives that will be lost? Or at the very least, is there no way to make current TB drugs, which cost less than $20 for a full course of treatment, available to everyone who needs them?    

I asked one of the medical doctors taking part in the Cape Town conference how a simple bacterium could be so difficult to deal with, and he confided the real cause of the hold-up: “There is no incentive in TB research.  If TB was half as prevalent in the USA as it is in Africa, there would have been new drugs, diagnostics and a vaccine by now.” I just wanted to cry.