Putting a face on XDR-TB

Last summer, Center for Disease Control officials quarrantined a man who’d flown from Atlanta to Prague via Paris, despite being ordered not to travel. CDC officials knew – though the man did not – that he was infected with XDR-TB – extensively drug resistant tuberculosis. For the first time in over forty years, the CDC used their authority to pull the man from a plane and put him into isolation in an Atlanta hospital.

The story gained a flurry of media attention – including interviews with airline passengers furious that they’d been exposed to the disease. But it didn’t do very much to raise the profile of XDR-TB in the United States.

James Nachtwey would like to change that. A celebrated war photographer honored in 2007 with a $100,000 TED Prize, Nachtwey has spent much of the past year photographing patients with XDR-TB in locations around the world. His work helps put a face on a dangerous, frightening, poorly-understood and fully preventable disease… and many possibly help stop XDR-TB from turning into a global pandemic.

Tuberculosis is an extremely common bacterial disease – it spreads through the air and it’s quite pervasive. One third of the world’s population is infected with the TB bacillus, though only 5-10% of those people will develop the disease. (People with weakened immune systems, including AIDS sufferers, are at much higher risk to develop TB.) These cases of TB are usually treatable with drugs like rifampicin and isoniazid. If these drugs aren’t properly administered – if too little is used, or treatment is stopped too soon – the TB bacillus can become resistant to these drugs. It’s then known as multiply drug resistant TB and can then usually be treated with quinolone, kanamycin, capreomycin, or amikacin. If these drugs aren’t administered well, the disease can develop resistance to some of these drugs, too – it’s then known as XDR-TB, and it’s a very expensive and difficult disease to treat at that point.

XDR-TB came to the attention of global health professionals in 2006 with an epidemic in KwaZulu-Natal, South Africa. In one rural hospital, out of 544 TB patients, 221 had multiply drug resistant TB, and 53 of these patients had XDR-TB. (All were HIV positive). Within a few weeks, 52 of 53 had died, including those on antiretroviral drugs. The few treatments that can cure XDR-TB are expensive, difficult to administer and have painful and dangerous side effects. The lessons learned from the XDR-TB epidemic in KZN largely have to do with limiting the spread of the disease from infected patients to highly vulnerable populations, like HIV+ people. (The good news in the KZN epidemic is that the spread appears most serious within hospital environments, where patients are close together for long periods of time – the spread of MDR-TB to people in the community who’d visited patients or interacted with them was roughly 1%.)

It’s not clear how widespread the problem of XDR-TB has become. There have been cases reported in 49 countries, including South Africa, India, Russia and the United States. It’s a very difficult disease to diagnose – while TB can be diagnosed within a day, diagnosing XDR-TB involves culturing baccili and testing their drug resistance, which can take weeks or months. In 2004, the World Health Organization estimated up to half a million cases of MDR-TB. Recent studies suggest that 15 to 20% of those cases might be XDR-TB.

Nachtwey’s photographs have examined the impact of HIV/AIDS in Southern Africa, one of the epicentres of XDR-TB infection, and his network of collaborators in the medical community were able to alert him to the importance and possible impact of XDR-TB before it entered most people’s awareness. With the 2007 TED Prize, Nachtwey had the opportunity to use the money and influence of the TED community to cover the story and disseminate the images. The challenge is that Nachtwey realized that he would have far less access as a photographer if governments were aware that he was documenting XDR-TB. So his work has been clandestine, and the subject of his work supported by the TED Prize was only revealed today. Photos of patients in South Africa, Lesotho, Swaziland, India, Sibera and other locations will be unveiled in New York City tonight, and will be published in this week’s issue of Time Magazine in an article called The Forgotten Plague.

“Forgotten” may be the right word to describe TB, a disease that gets much less attention than HIV or even malaria, despite its enormous global impact. But XDR-TB is too new to be forgotten – it’s simply not well known or understood outside healthcare circles. Nachtwey’s intervention is a timely one – the ways to prevent XDR-TB from becoming a pervasive global threat have to do with strengthening healthcare systems in vulnerable nations. If hospitals and community health organizations can diagnose TB early and ensure compliance with treatment, the disease shouldn’t progress to multiple drug resistance.

But improving developing world hospitals is a difficult and expensive task. Eliminating pharmaceutical fakes may be even more difficult. Fake precription drugs are extremely common in developing nations, and a TB patient who is religiously taking rifampicin may only be getting the drug half the time… a prescription for creating MDR-TB. As Nachtwey raises awareness about XDR-TB, I hope that people will pay attention to innovative efforts like mPedigree, designed to combat pharma fakes using information technology and mobile phones.

Nachtwey’s campaign launches today at XDRTB.org. Here’s hoping his photographs will help draw attention not just to a treatable disease, but to the need to fix many aspects of the global healthcare system, including strengthening community hospitals and fighting drug piracy.