The emergence of a devastating drug-resistant strain means that tuberculosis now kills more of us than malaria. Award-winning photographer James Nachtwey travelled from Siberian prisons to Cambodian clinics to document the battle against this 'virtually untreatable' and deadliest of diseases
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- The Observer,
- Sunday October 5 2008
In one photograph a young boy, his arms spread as if in supplication, gazes listlessly at the ceiling as a woman - his mother, we presume - cradles him tenderly in her arms. In another, a grey-haired man attached to an oxygen cylinder sits cross-legged on a hospital bed staring vacantly into the middle distance. In two further pictures we encounter similar expressions, this time in the eyes of a man bundled up in bed taking his meds and a baby framed against the film of a chest X-ray occluded by ghostly white shadows.
The child in the first picture is Chan Thai, a 12-year-old from Svay Reing in Cambodia. He is pictured in the throes of tuberculosis meningitis, a disease that should no longer afflict children in this century. The names of the others have not been recorded, but whether from India or Lesotho, Swaziland or Siberia, they too are victims of TB, a disease now re-emerging in a deadly new form with devastating consequences in villages, shanty towns and cities across the globe.
'Tuberculosis is a shocking disease,' explains James Nachtwey, the American war photographer behind these extraordinary images. 'I'm a very experienced journalist. I've seen a lot of terrible things in this world, but witnessing TB is something that affected me as profoundly as anything I saw in Iraq or Afghanistan. My heart went out to the victims and when people see these photographs I hope their hearts will go out to them, too.'
Starting this weekend, Nachtwey will get his wish when TED, a New York-based organisation that brings together leading scientists, thinkers and designers committed to social change, begins exhibiting his photographs in galleries around the world. The brainchild of Chris Anderson, a former magazine entrepreneur, TED grants $100,000 to three outstanding people each year and gives them 'one wish to change the world'. Nachtwey's was to use his skills as a photojournalist to raise global awareness of 'extensively drug resistant tuberculosis' (XDR-TB for short) and in the process demonstrate the power of news photography in the digital age.
With TED's funding, Nachtwey travelled to countries as diverse as Cambodia, Siberia, Rwanda and India, documenting the depredations of XDR-TB and the efforts of governments and NGOs to pioneer new treatment programmes that may arrest the disease's progression. On Friday, TED unveiled a slide show of more than 50 of Nachtwey's images at the Lincoln Center in New York and the National Theatre in London. Over the next few weeks the same photographs will be shown on outdoor screens in 50 cities worldwide and on the internet as part of a multimedia campaign that aims to harness the power of the web and 'viral marketing' techniques. At the same time the UK think-tank Demos will exhibit Nachtwey's photographs in a gallery in Brick Lane, east London, renamed the Emergency Room.
Nachtwey's aim is to bring TB more into the 'mass consciousness,' in the hope of kick-starting an action campaign that can leverage more funds for aid. 'The problem at the moment is that very few people in the West are even conscious of TB,' he says. 'The more people are aware of it, the easier it is to raise funds and get sponsorship for research.'
Tuberculosis is one of the oldest diseases known to man and certainly one of the deadliest. Evidence of tuberculosis has been found in the skeletons of Egyptian mummies and in an Iron Age settlement in Dorset. Scientists estimate that in the past 400 years TB has killed some 2bn people worldwide, and disfigured, crippled and blinded countless more. It is not for nothing that the 17th-century English writer and preacher John Bunyan called TB 'the captain of all these men of death'.
Spread like the common cold or flu by coughing and sneezing, the tubercle bacillus most commonly infects the lungs, slowly eating away at the spongy tissue essential for respiration and forming abscesses that discharge foul-smelling pus. However, the microbe spares no part of the human body and can also spill into the digestive tract, causing ulcerations of the throat and bloody diarrhoea, or into the bloodstream where it causes a condition known as milliary tuberculosis that can prove fatal to the kidneys, heart and other organs. If it crosses the blood-brain barrier, TB can also cause meningitis, coma and death.
More usually, however, Mycobacterium tuberculosis is a seductively slow assassin. Hippocrates labelled the disease phthisis - from the Greek term for 'wasting' - because of the way that patients under its influence seemed to gradually wither away, and even after Robert Koch's groundbreaking isolation of the bacillus in 1882 doctors continued to refer to TB as 'consumption' well into the Twenties. At the height of the disease's prevalence in the 18th and 19th centuries it claimed the lives of as many as 100,000 Britons every year. Prominent victims included John Keats, Emily Brontë and Robert Louis Stevenson - associations that gave it an aura of romance and poetry. However, for anyone who has witnessed the disease at close hand, there is nothing romantic about TB, and today it is back with a vengeance.
The World Health Organisation (WHO) estimates that every year TB kills 1.6m people - or one person every 18 seconds (by contrast, malaria is responsible for some 1m deaths worldwide, or roughly one person every 30 seconds). Although that is still short of the annual death toll from HIV/Aids (between 1.8m and 2.3m), separating the two diseases increasingly makes little sense. 'If there's a high population with HIV, then people are much more susceptible to the disease,' explains Nachtwey.
Born in Syracuse, New York, Nachtwey made his name as a witness to some of the world's bloodiest and most intractable conflicts. A five- times winner of the Robert Capa Gold Medal, he covered the Troubles in Northern Ireland in the early Eighties, the Serb invasion of Kosovo in 1999 and countless other war and famine zones from Bosnia to the Sudan. In 2003 Nachtwey was on assignment with a US Army platoon in Iraq when an insurgent tossed a grenade into his Humvee. The grenade severed the hand of one of his journalistic colleagues, but Nachtwey still had the wherewithal to photograph the medics who came to their rescue before he passed out.
He first became interested in TB in 2000 when Time magazine sent him to South Africa to cover Aids. The government was still in denial over the scale of the epidemic, but visiting villages and wards where people with HIV were sent for 'treatment for TB', it soon became obvious that the two diseases were linked and the problem was growing.
Then, in 2003, the Cambodian Health Committee (CHC), an independent NGO that is the brainchild of Harvard infectious disease expert Dr Anne Goldfeld and a former Cambodian refugee worker Dr Sok Thim, invited Nachtwey to document their in-country treatment programme. Nachtwey travelled with Thim to Svay Reing, delivering drugs to remote rural areas and going on house visits. It was during one of these visits that he photographed a 12-year-old peasant boy who had just lost his mother to TB. Nachtwey arrived just as the boy, dressed in Buddhist robes, was preparing to lead the funeral procession through the paddy fields to the funeral pyre. His photograph of Va Ling, clutching a framed picture of his mother to his chest, is both moving and timeless. Exhibited in 2007 at the United Nations in New York on the occasion of World TB Day, it was this photograph - and the reaction to it - that convinced Nachtwey that a slide show of similarly arresting images could be a means of raising consciousness of TB worldwide.'There are lots of very impressive statistics about TB, but I wanted to put a human face on it.'
With TED's help, Nachtwey visited seven countries blighted by XDR-TB, returning to Cambodia and South Africa but also documenting new TB hotspots such as Rwanda, Lesotho, Swaziland and Siberia.
An airborne rod-like microbe, Mycobacterium tuberculosis is most commonly transmitted in air droplets when someone coughs or sneezes. The good news is that unlike a cold or flu, TB is not highly contagious - it usually takes several hours of continuous exposure for a sick person to transmit the disease to someone who is healthy. The bad news, however, is that the bacillus can hang around in the atmosphere for weeks or months - much longer than other bacteria - and although 60 per cent of those infected will successfully fight off and destroy an infection, one in three people continues to carry the bacillus in dormant form. The danger is that if their immune system is suddenly compromised or they are infected with HIV, these latent infections may revive.
Even so, if TB is diagnosed early, it is eminently treatable, usually with a six- to eight-month course of oral antibiotics. However, if patients fail to complete the prescribed course of treatment, the bacteria may become resistant, meaning doctors have to prescribe other harder-to-tolerate second-line medications, for periods of between one and two years. This in turn makes compliance even harder, resulting in a vicious cycle of rising rates of multi-drug-resistant TB (MDR-TB) and new infections.
Resistance to streptomycin, the original TB drug, was first reported in 1948. Since then the bacillus has also bred resistance to rifampicin and isoniazid - the front-line combination therapies recommended by the WHO - as well as to many second-line oral antibiotics and third-line injectable drugs.
The result is that last year there were 500,000 new cases of MDR-TB, of which 2 per cent were deemed by the WHO to be XDR-TB and 'virtually untreatable'. Baku, the capital of Azerbaijan, and Tomsk Oblast in Siberia, which houses a 7,000-strong prison population, were particularly hard hit with some of the highest rates of MDR-TB ever recorded.
In South Africa TB is closely linked to rising rates of HIV, whereas in Russia the resurgence of the disease can be traced to the economic dislocation that followed the demise of the Soviet Union. As health and social services collapsed and alcoholism skyrocketed, many people developed TB because their immune systems, weakened by drugs, alcohol and poor nutrition, could no longer keep latent TB in check. During the long, cold Siberian winters, the hallways and unventilated cells of the Tomsk jails also provided ideal conditions for the transmission of the virus, resulting in the prisons becoming an 'epidemiological pump' spreading the disease throughout the general population.
As part of his journey Nachtwey visited one of the Tomsk prison colonies. His guide was Partners-in-Health (PIH), a Boston-based NGO founded by Dr Paul Farmer that helps manage treatment programmes inside Siberian prisons, as well as in community settings.
When PIH first arrived in the region, the WHO had effectively written off MDR-TB as untreatable. Instead, it was insisting that Russia adopt its directly observed therapy short course (DOTS) treatment programme, despite the fact that in many parts of the country chemists had run out of the oral antibiotics.
Armed with a $10m grant from the Global Fund to Fight Aids, TB and Malaria, PIH adopted a different strategy. Beginning in 2000 it encouraged local doctors, first in the prison system and then throughout the region, to treat all cases of MDR-TB aggressively. At around the same time, the WHO agreed to green-light the supply of second-line drugs at sharply reduced prices. The result was that the cost of treating a patient was halved, from around £6,000 to £3,000, and compliance rates shot up. Today, PIH claims its 'DOTS-plus' programme in Siberia is achieving a near 80 per cent cure rate. However, while the deaths from TB are down, drug resistance is still rising - about 15 per cent of new cases according to the latest figures.
Despite this setback, Nachtwey insists PIH's programme is a rare success story. 'They've shown that in most cases TB can be cured - you can actually be healed.'
Nachtwey was similarly impressed by PIH's facility at a hospital in Maseru, Lesotho, which it runs in partnership with the government and which boasts similar cure rates. And in India, which has the highest number of TB cases of any country in the world, he spent 10 days visiting hospitals and clinics in Mumbai and Chennai, where he found government programmes are also well organised.
However, the country he knows best and where he has seen the most marked progress is Cambodia. When Sok Thim and Anne Goldfeld founded the CHC in 1994 the country had some of the highest TB rates in the world. As in Russia, the MDR-TB cases were considered untreatable. Goldfeld and Thim changed all that by offering patients free medication if they signed a contract pledging they would finish their treatment and by getting friends and family to serve as co-guarantors. At the same time CHC negotiated nutritional supplements from the World Food Program, thus reducing the likelihood that patients and their families would go hungry - a key factor in speeding recovery.
The result is that CHC has treated 13,000 Cambodians for TB and boasts cure rates as high as 95 per cent. At the same time, Goldfeld, who also runs a biomedical research lab at Harvard, has been able to identify a key susceptibility gene for TB and a unique immune reaction that helps the microbe evade human immune defences - research that may eventually lead to new treatments and vaccines.
Now, with the help of the WHO, Goldfeld is negotiating wider access to subsidised drugs and running a trial looking at the best timing for medications for patients with dual TB/HIV infections.
'Our programmes show that everyone can be well if you give them the right education and support,' says Goldfeld. 'It doesn't matter if you live in the city or the poorest part of Cambodia. If you get the drugs to people and provide communities with food and other forms of support, TB can be beaten.'
However, for all the progress that has been made in Svay Reing, CHC operates on a shoestring and can't be there to treat every patient or prevent every new infection. This is the true tragedy of TB. Sometime between the Twenties (when French researchers first developed the BCG vaccine) and the Fifties (when the vaccine was first given to schoolchildren in Britain and other European countries), the West took its eye off the ball. Thinking that TB had been consigned to the dustbin of medical history, we failed to invest in new drugs or better vaccines that would extend the protection conferred by the BCG to adults in later life. As Paul Farmer, the founder of PIH and a medical anthropologist with years of experience treating TB and other infectious diseases puts it: 'In failing to curb tuberculosis a window of opportunity has been slammed shut. We must acknowledge that our guilt surpasses that of earlier generations who lacked our resources.'
Chan Thai is a case in point. Tuberculosis meningitis is extremely rare in the UK thanks to immunisation with the BCG and good child healthcare services. Not so in Cambodia. Nachtwey and Goldfeld first encountered Chan Thai at the local hospital in Svay Reing where his mother had brought him for emergency treatment. One of four children from a farming family, Chan Thai had collapsed suddenly at home with a fever and convulsions. At hospital he was given a spinal tap and a cocktail of antibiotics. Even so, doctors couldn't prevent him suffering further seizures and slipping into a coma. Fortunately, he recovered and was eventually able to return home.
Nevertheless, when Nachtwey took his photograph, says Goldfeld, Chan Thai was still clearly mentally discombobulated - hence the vacant, far-away look in his eyes. 'This is not MDR-TB, this is what even normal TB can do,' says Goldfeld. 'Although the picture was taken in Cambodia, it could have been taken in Kosovo or Cuzco - anywhere that TB is rampant.'
Details of Nachtwey's slide show are on www.xdrtb.org. For further information about TB worldwide or to donate to TB Alert, go to www.tbalert.org or www.stoptb.org.
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