In a remote village in Papua New Guinea’s Gulf province doctors and nurses from Médecins sans Frontières (MSF) are running an outreach clinic for patients with suspected tuberculosis (TB). The surrounding jungle is as wet as it is lush, the air is thick with humidity.
Dr Ayuko Hirai is tapping and listening to the chest of Mara, an emaciated five-year-old boy who can scarcely summon the energy to whimper. His dry cough, weight loss and ragdoll demeanor all suggest he is in the grip of the disease. There is nothing that can be done for him locally and he is put on a bus to hospital for a formal diagnosis and treatment.
The vehicle, a repurposed truck with a tarpaulin roof and hard wooden seats, is not ideal for a desperately sick child but his father does his best to protect him from the bumps and jolts as it lurches down the muddy and rutted track towards the coast. The hospital at Kerema is about an hour away away but is clean, well staffed and naturally ventilated with Coral Sea air.
“The boy is malnourished. I think he has TB but he needs a proper diagnosis. When he’s in hospital he will receive proper treatment and care. I want to refer both of them as the father is ill as well,” says Dr Hirai.
Beguiling and beautiful as Papua New Guinea is, it’s a tough place to grow up or grow old.
Taking in the islands of the Bismarck archipelago, its population of eight million speak over 800 different languages and many inhabit areas so remote that medicines, if available at all, have to be helicoptered in.
Natural disasters and civil unrest are common and the country is one of only a handful not to have reached any of the millennium development goals. Average life expectancy at 62.9 is the lowest in the world outside of Africa.
TB is a particular problem. The national capital district has the highest incidence of multi-drug resistant TB in the world, with 1,300 cases per 100,000 of the population.
The government declared TB a public health emergency in 2014 and launched a national strategy in 2015, particularly focusing on MDR-TB in hotspot areas such as the national capital district and Daru, an island where – at its peak – 80 per cent of those diagnosed with TB had the multidrug resistant form of the disease.
The disease is terrifying: TB can occur throughout the body but it is most commonly contracted in the lungs. And it is this pulmonary TB that is the most infectious as it is transmitted through droplets in the air when patients cough. Early symptoms of the disease include weight loss, night sweats, loss of appetite and high fever. The sufferer will also have a persistent cough, often producing blood.
TB is completely treatable and curable with antibiotics but if left untreated patients will die, spreading it among their loved ones.
Many in the west regard TB as something that has been consigned to history. We think of the consumptive heroes and heroines of Victorian novels clutching blood-splattered handkerchiefs to their breasts.
But TB is still with us. Indeed it remains the single biggest infectious killer worldwide – the latest data from the World Health Organization shows that in 2017 10m people contracted the disease and 1.6m people died, more than from HIV and malaria combined. Worse, it is also developing resistance to the drugs we are dependent on to treat it.
TB, known as the white death because of victims’ sickly pallor, is an ancient killer – traces of it have been found on Egyptian mummies. It is took hold in the rapidly urbanising populations of Europe and North America in the 18th and 19th centuries and the Mycobacterium tuberculosis pathogen is thought to have killed more people in history than any other.
It wasn’t until the development of antibiotics in the 20th century that doctors began to get a grip on the disease. UK researchers were at the forefront of this work – the world’s first ever randomised control trial took place in Edinburgh in the 1940s when researchers treated TB patients with the antibiotic streptomycin. Slowly the disease was all but wiped out across Europe thanks to the introduction of antibiotics, improved living conditions and the introduction of a vaccine.
In the richer, developed nations TB fell off everyone’s radar but in low and middle income countries the disease was still running rampant and it wasn’t until the explosion of HIV in the 1980s and 1990s that interest was reignited.
TB is is more likely to occur in people whose immune systems are weakened, as is the case with people with HIV. Around 300,000 of those who died from TB in 2017 were HIV positive and in some high burden parts of the world TB kills up to half of all AIDS patients.
Another problem jeopardising the eradication of TB is the development of drug-resistant strains of the disease, which require special regimens of a cocktail of toxic drugs.
Around half a million of the 10m estimated to have contracted the disease in 2017 have the drug-resistant form of the disease, which is more likely to occur when people don’t stick to treatment. But the drug-resistant form can also be spread person to person.
Mel Spigelman, chief executive of the non-profit TB Alliance, describes TB as the “quintessential disease of poverty.”
“What is needed to eradicate TB would be a combination of both new and better drugs and an effective vaccine. There are new drugs on the horizon but a vaccine is a long way off,” he says.
If we’re going to be really successful in eradicating TB we will need significantly more resourcesMel Spigelman, chief executive of TB Alliance
On Wednesday, the United Nations will hold its first ever high-level meeting on TB during its general assembly. Those working in the TB field hope that the presence of heads of governments will generate much needed momentum into the fight against the disease.
Previous UN high level meetings on antimicrobial resistance and non-communicable diseases have generated fine words, but not a lot of action.
Rachael Hore, TB policy advocacy officer at Results UK, a campaigning organisation, says that everyone is hoping for a repeat of the 2001 UN meeting on HIV which kickstarted the fight against that epidemic.
“The 2001 meeting on HIV was generally seen as a watershed moment. TB, on the other hand, has remained at the bottom of the list of political priorities, and as a result climbed to the top of the list of infectious disease killers.” she says.
“This is reflected in woefully inadequate investments in both research and development, and treatment and prevention on the ground, for TB. One of the problems is that TB has been a slow burn that has been around for thousands of years. It was declared a public health emergency 25 years ago but since then there have been 50 million deaths,” she adds.
Dr Spigelman says more money and donors are needed – the UK government has been a generous funder of the disease as has the Gates Foundation, he says.
“But there aren’t many other funders that have been very supportive,” he says. “If we’re going to be really successful in eradicating TB we will need significantly more resources,” he adds.
There have been promising developments in recent years – a new drug, bedaquiline, has been introduced into the treatment regimen and just this week there were promising early results from vaccine trials. New molecular testing regimes have also cut down the time it takes to diagnose the disease.
But TB is a complex organism and this complexity means that TB patients have to take a cocktail of toxic drugs over a long period – those with the least complicated form of TB have to take several different pills daily over six months. For those with drug resistant strains of the disease treatment can last for up to two years, beginning with daily, painful injections. Side effects of the drugs include permanent deafness, blindness and even psychosis.
The WHO has recently introduced a shorter regimen for MDR-TB treatment lasting nine months instead of two years but these new treatment guidelines are likely to take a while to bed in.
“Even six months is a very long time for anyone to stick with a rigorous course of antibiotics. You take four different drugs for a couple of months and then two different drugs. When they start feeling better people stop taking them or forget the dose,” says Dr Spigelman.
Patients have to be supervised by a health worker when they take their drugs to ensure they stick to their regimen – known as directly observed therapy – and in remote parts of the world, where health facilities are few and far between, this can present huge problems.
In Papua New Guinea, the complexities of treating patients living in remote communities is glaringly obvious. Many of the patients registered with the MSF TB clinic at Kerema Hospital live in remote river communities and the only way they can get to hospital for their daily treatment is by boat.
On the day the Telegraph visits, patient Kari Dusty has come to hospital to pick up the monthly food parcel MSF gives to all MDR-TB patients.
Kari is about six months into her two-year treatment – she picks up her drugs and parcel and MSF takes her back to her village, a 40-minute boat trip along the jungle lined river. For a visitor this trip provides a once-in-a-lifetime glimpse into the lives of these remote river communities – but for Kari it’s a daily chore.
MSF drops her off in her village and then we walk for about half an hour along a jungle path to another village to administer another MDR-TB patient with his daily injection and cocktail of pills. The injection and administration of the pills takes about 30 minutes – TB treatment is a resource-intensive process.
The next day at hospital we meet 24-year-old Maggie Toare who is coming to the end of her two-year treatment for MDR-TB. Maggie has become something of an advocate on the importance of finishing TB treatment.
“Sometimes I felt like giving up and stopping taking the medication because it was so difficult. But I realised my life was important so I carried on. The side effects have been horrible – I got bad itchiness on my body and my face was swollen,” she says.
But she adds: “TB is 100 per cent treatable and 100 per cent curable – now I’m free.”
Maggie had never heard of TB when she was diagnosed, which seems astonishing in a country where the disease is rife and for an articulate, engaged woman. Ignorance of this highly infectious disease is widespread – not only of its existence but also of how it is spread.
Witchcraft and sorcery are still practised in some parts of the country and there is a belief amongst some that TB sufferers are cursed. A reliance on faith healing is another problem.
Such ignorance of the disease is common, says Dr Rendi Moke, who runs the TB clinic at Port Moresby General Hospital in the country’s capital. He tells us about a teenage patient with extensively drug resistant TB (XDR-TB) – the most complex form – whose mother would prefer to rely on the curative powers of a faith healer than hospital treatment. The girl will die soon if she’s not treated, says Dr Moke.
“I’ve spoken to her mother and she says that they’re praying for her daughter and she’s taken some herbal treatments. I try to do as much as I can but you can’t force the family to come for treatment,” he says.
He is on the front line of the epidemic but has some powerful weapons in his arsenal – the hospital is using the latest molecular testing for the disease, it has introduced the shorter treatment regimen for MDR-TB and he has a brand new outpatients clinic.
He takes us on a tour of the hospital and we meet Tina, a patient in the MDR/XDR-TB ward – patients with the most complicated forms of TB have to stay in hospital during their treatment in a bid to prevent transmission and ensure patients stick to their therapy.
Tina has been on the ward for two months, leaving her baby at home with her family – her husband is in the army and she’s not seen him since she’s been in hospital. Patients with TB suffer a great deal of stigma – they lose their jobs if they have to be on treatment for any length of time and are sometimes abandoned by their families, says Dr Moke.
An example of this is a 12-year-old boy in the paediatric ward who is likely to die soon as the disease is in his brain – his family no longer come to see him, probably because they don’t have the means to get to hospital, says Dr Moke.
Later on we meet Keith who has been on and off TB treatment for about five years. Keith has no family and has had problems with alcohol as well as being in trouble with the law – Dr Moke got him out of prison and he’s now locked up in a single room which looks more like a prison cell than a hospital ward. Keith is dishevelled and lives a lonely existence – but locking him up is the only way to ensure he sticks to his treatment.
This has been a sobering visit and you wonder how Dr Moke and his colleagues find the will to come into work every day. But as we walk around the hospital Dr Moke breaks into a smile – he has spotted the teenage girl whose mother was relying on faith healers.
Her mother has brought her in for conventional treatment – this is fantastic news and is a glimmer of light in what has been a fairly depressing visit. TB is 100 per cent curable as long as patients stick to their treatment.
“This girl has a chance. She has to stick to her drugs as you cannot half treat TB,” says Dr Moke.
Back in Kerema little Mara and his father have made it to hospital. Mara will get the right drugs and, under the care of the hospital should stick to his treatment. There is every chance he will survive this horrible but treatable scourge.
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