Childfund.org.au

Tuberculosis:
The cruel scourge for children
in Papua New Guinea
A report by Jo Chandler for ChildFund Australia

ChildFund Australia Tuberculosis: The cruel scourge for children in Papua New Guinea About the Author
Foreword .01
Jo Chandler
Executive Summary .02
Jo Chandler is an award-winning Australian journalist, author and editor, Preface: a reporter's notebook . 04
as well as an Honorary Fellow at Deakin University's Contemporary Histories Research Group. She has filed news and features from assignments across Tuberculosis: a beginner's guide .07
sub-Saharan Africa, Papua New Guinea, rural and remote Australia, Antarctica and Afghanistan. Jo has earned distinctions as an essayist, profile writer and Tuberculosis in Papua New Guinea .10
narrative journalist, and is recognised for work across a range of specialty areas: science; environment; health; human rights; women's and children's TB's youngest victims . 11
issues; aid and development. In addition to a Walkley Award, Australia's most prestigious journalism prize, Jo has received a range of other accolades for Calculating the casualties and the cost .13
her work as an investigative journalist, including the Melbourne Press Club Battling TB:
Quill for Best Feature, the George Munster Prize for Independent Journalism, a view from the frontline . 15
the University of New South Wales Bragg Prize for Science Journalism, the Australian Council for International Development Media Prize, and the United The last word: solutions and recommendations .18
Nations Association of Australia Media Peace Award. A strategy to end TB .18
The Global Fund .20
Medical research and development . 21
About ChildFund Australia
ChildFund Australia is an independent and non-religious international development organisation that works to reduce poverty for children in the developing world. The organisation is a member of the ChildFund Alliance – a global network of 11 organisations which assists more than 14 million children and families in 63 countries.
ChildFund works in partnership with children and their communities to create lasting change by supporting long-term community development, responding to humanitarian emergencies and promoting children's rights. Established in 1994, ChildFund Papua New Guinea is the representative office of ChildFund Australia and undertakes child-focused community development programs in the Central Province and National Capital District. Key projects are implemented in the areas of maternal and child health, education, water and sanitation, livelihoods and child protection. In 2015, ChildFund PNG also established the country's first Family and Sexual Violence Counselling Hotline which operates in Port Moresby and provides national coverage.
ChildFund Australia is a registered charity, a member of the Austrlalian Council for International Development, and fully accredited by the Department of Foreign Affairs and Trade, which manages the Australian Government's overseas aid program.
ChildFund Australia, August 2016

ChildFund Australia Tuberculosis: The cruel scourge for children in Papua New Guinea There can be few more challenging and imperative goals in the field Tuberculosis is a contagious, airborne and – for the In 2014, TB killed 1.5 million people, including 140,000 of child health than to beat the cruel scourge of tuberculosis (TB). past 60 years – curable disease caused by one of the children, according to the World Health Organisation.¹ most infectious bacteria in human history. Today it Of the 9.6 million people estimated to have fallen ill with It is shocking and shameful that globally more than 140,000 children die each ranks alongside the human immunodeficiency virus the disease in 2014, one million were children. year, and that one million become sick, from an entirely curable and largely (HIV) as a leading cause of death worldwide.
While TB has largely vanished – even from memory – in the wealthy world, it continues to thrive in conditions of Many children do survive, but with their bodies and minds profoundly damaged poverty. Today, more than half the TB disease burden falls after the bacteria infiltrates their bones or brains. The luckiest recover at in the Southeast Asia and Western Pacific regions; the substantial cost to their education, their prospects and their families, whose biggest tolls in India, Indonesia and China. fragile livelihoods are eroded by the effort to provide care, medication and nutrition to sick children over months and even years of treatment. This feeds PNG has only a fraction of the population of these nations, into a diabolical generational cycle of more disadvantage, brewing more disease. but is suffering a "rampant" tuberculosis emergency.² It has one of the highest prevalence rates globally: 529 cases per As childhood TB survivor Archbishop Desmond Tutu has observed: "Tuberculosis 100,000 population.³ It is also a country which has some of CEO, ChildFund Australia is the child of poverty, and also its parent and provider." the worst human development indicators in the world.
Fifty years ago, we witnessed the vanishing of tuberculosis from the wealthy Children account for 26 per cent of detected TB cases world. With the arrival of antibiotics to treat it, many experts predicted it was only in PNG⁴ but this is likely to be just a fraction of the real a matter of time before this ancient killer was wiped out entirely, like smallpox. story. In PNG, as in other TB-endemic nations, there are But they underestimated the tenacity of Mycobacterium tuberculosis, and they formidable challenges to the diagnosis and treatment of overestimated humanity's resolve. paediatric cases⁵, with the disease frequently misdiagnosed or overlooked.⁶ Today the Asia-Pacific region carries the heaviest burden of disease. Over the past three years in Papua New Guinea (PNG), Australia's nearest neighbour and Although TB characteristically occurs in the lungs, it can former colony, the death toll from TB was 9,000. A sobering point of comparison affect any part of the body. Infants and small children are is that the Ebola virus, which galvanised such international fear and concern, particularly vulnerable to infection in the brain or bones killed 11,300 people globally in the same period. or other organs, and the consequences if they survive can be profound lifelong disability. In a nation in which there is the child of
PNG is also recording outbreaks of deadlier drug-resistant strains of TB. is little, if any, disability support, this is shattering for the Often referred to as "Ebola with wings", Jennifer Furin, writing for The Lancet prospects of the child and their family.
poverty, and
Respiratory Medicine, describes this modern-day mutation as having "health, population and economic consequences that will almost certainly eclipse those In recent decades, the TB bacteria has evolved to resist the also its parent
of both the Ebola and the recent Zika virus outbreaks". antibiotics that have been the main weapon against it since the 1950s. New strains of multidrug-resistant TB (MDR- Many failures have contributed to the problem unfolding today: in medicine, TB) and extensively drug-resistant (XDR-TB) are deadlier in the markets, in politics and diplomacy. But there are also heroic stories and much more difficult and expensive to treat. Regular Archbishop Desmond Tutu, of individuals and communities doing their best to utilise the tools and TB requires a standard six months of treatment; MDR-TB childhood tuberculosis survivor understanding we now have to beat the disease, and it is these people whom presently requires a regime of daily, intensive drug treatment ChildFund is supporting. over two years, with a success rate of only 50 per cent.⁷ While we continue to urge that leaders find the will, resources and strategies to Outbreaks in PNG have been described by international win the war, ChildFund is equipping communities at the frontline with the means experts as "unprecedented".⁸ A joint statement on the to win their battles, to save lives and livelihoods, and protect children's futures.
TB emergency in PNG signed by representatives of the PNG, Australian and US Governments, the World Health Organisation, non-government organisations (NGOs) and medical research partners in November 2015 declared: "The cost of inaction will be catastrophic in terms of

Tuberculosis: The cruel scourge for children in Papua New Guinea Preface:
a reporter's notebook
In June 2011, ABC Radio carried After arriving on an Australian island in Torres Strait, the girl was airlifted to Cairns a story about a man from Western Base Hospital where she died of TB. The father was diagnosed with the same Province in PNG who had put his disease and treated. He was then told that he would have to take his daughter's sick 14-year-old daughter in a body back to PNG in his dinghy. A public appeal by Queensland MP Warren While TB has largely
dinghy and paddled her the short Entsch raised enough money to fly them both home with some dignity.
distance between one of the vanished – even
worst health systems in the The report was sparse, but its desperate undercurrent stuck with me.
world and one of the best.¹⁰ from memory – in
I was then a reporter for The Age in Melbourne. An occasional foreign correspondent, I had a reasonable understanding of TB and its powerful the wealthy world, it
resurgence as a consequence of the HIV and AIDS epidemic in Africa. I had visited TB wards and HIV clinics in Mozambique, Democratic Republic of Congo continues to thrive in
and Malawi. People living with HIV are around 30 times as likely as others to develop tuberculosis.
conditions of poverty.
What was the story in PNG? Research soon revealed that specialists in PNG and Australia were deeply concerned about what they feared had the makings of an epidemic. Curiously, it appeared to be largely unhooked from the HIV epidemic. Co-infection rates were – certainly compared to sub-Saharan Africa – comparatively low.¹¹ Daru, just off the PNG coast and close to Australian waters, was by all accounts the epicentre of this outbreak. So I added Daru to my itinerary for a forthcoming field research trip for The Age.
lives lost, and astronomical in terms of financial cost … and better healthcare support for patients – to not only What we found in Daru Hospital in August 2011 were conditions beyond the ultimately, TB and drug-resistant TB pose a great threat reduce infection rates and improve health outcomes, but worst I had seen in hospitals in Kinshasa, hitherto my baseline for as-bad-as-it- to Papua New Guinea's development".⁹ to avoid further increases in MDR-TB. This will require gets. The broken-down hospital was overflowing with patients. They spilled from significant investment in PNG's healthcare systems and the beds onto the floors, into corridors, outside on the wide verandahs, under The PNG National Department of Health has developed the mango trees.
plans to tackle the national TB situation and the drug-resistant outbreaks. They rely on strengthening the health Innovative solutions in the area of medical research and Vital equipment was broken, drug supplies had run out, infection control was system. However, to date, progress on these plans has been development will also play an important role in reducing non-existent. There were no doctors on the wards and nurses were stretched stymied by a lack of funding and political will.
caseloads, both in PNG and other TB-endemic nations. beyond their limits. It later emerged that several contracted TB during this Already, new TB vaccines are being trialed, improved Finding effective solutions to address the TB epidemic in pharmacological treatment products are available, and the PNG is not impossible, but will require far greater levels roll-out of GeneXpert diagnostic machines is improving "Each morning, the sick are turned too quickly out of 90 beds to accommodate of cooperation and determination, internationally, across healthcare efficiencies in terms of TB testing and treatment.
the next wave," I reported in The Age. Many came from the town settlements agencies, and at all levels of society.
where thousands pour in from villages along the Fly River delta to get access to More broadly, it is absolutely crucial to address the health, education and other services, or because drought, seawater inundations In addition to the key principles outlined in WHO's End social and economic conditions which perpetuate the or the tailings from the Ok Tedi mine upstream have wiped out their crops.
TB Strategy, experts note that moving from a passive to spread of the disease in PNG. The combination of poor active case finding model is critical in the context of PNG. nutrition, inadequate housing, and limited access to basic This requires improved detection methods, increased services, which is the reality for much of PNG's largely community awareness of the disease and its symptoms, rural population, provides the ideal conditions in which TB continues to thrive.

ChildFund Australia Tuberculosis: The cruel scourge for children in Papua New Guinea The patients included two little girls with TB meningitis, GeneXpert machines, a relatively new tool which can What we found in Daru Hospital were
the infection having damaged their brains. Felina was seven quickly diagnose strains of TB, had revealed that instances months old, and her young parents kept vigil with a Bible of drug-resistant TB were, in the words of the head of conditions beyond the worst I had
and prayers. Next to her was Christina, six years old but WHO's PNG chief at the time, "off the charts" in Western weighing just eight kilograms. Her mother washed her in a Province and neighbouring Gulf Province. By November seen in hospitals in Kinshasa, hitherto
shallow plastic dish on the floor. Christina's eyes were wide 2015, an international meeting convened by the PNG and vacant. The infection had profoundly damaged her Government and WHO officials in Port Moresby appealed my baseline for as-bad-as-it-gets.
brain. Christina did not survive.
for an urgent response, describing the cost of inaction as "catastrophic". Still, not much happened.
In the settlements, where it is not unusual to find shanty houses with more than 30 residents, I saw what happens In April 2016 I returned to Daru, reporting for ABC Radio The failures were many and complex: a weak, Finally, I must declare a personal interest. At some point when children disabled by TB survive. I met Soba, a mother National. There were still nowhere near enough beds, overburdened and poorly resourced health system; a during that first visit to Daru in 2011, maybe in the hospital, cradling her four-year-old son, Sawai (see p6). He had a healthcare staff or outreach programs to meet the needs free-falling national economy; complex local and regional maybe visiting the close communities of the settlements, beautiful smile but withered legs he couldn't use. He was of diagnosed patients, let alone discover those people politics; lumbering international health bureaucracies. And I breathed in a drug-resistant strain of Mycobacterium too big to carry, but Soba had no choice but to haul him incubating and unwittingly spreading disease. Doctors told at the bottom of it all, growing communities of closely tuberculosis. over the mudflats as she went about her business of getting of cases where children were living in households with packed, poorly nourished people – the very conditions in food, water and firewood for her family.
parents diagnosed with TB, including drug-resistant strains, which Mycobacterium tuberculosis thrives. I had the luck to be born into one of the world's best health but those children had not been tested or treated because systems and received treatment over an 18-month period, In November 2012 I passed through Daru again and of a lack of resources. It was almost inevitable that they I've reflected on the story of Daru over the years because worth more than $200,000. This report is dedicated to the found that while conditions in the hospital had improved, would contract the disease.
it highlights the casualties of TB, and testifies to the millions of people who share my diagnosis every year, but thanks to investment by the Australian Government, the complexities of the disease. This is not merely a health not my privilege.
dimensions of the TB situation were growing. issue. It is a combination of social, political, economic, commercial and diplomatic factors, all of them conspiring to give this wily bacteria its enduring, diabolical power.
Jo Chandler discovered that instances Soba and four-year-old son Sawai, who is of drug-resistant TB in Western Province suffering from wasting as a result of TB infection were "off the charts" (image by Jason South/Fairfax Syndication)

ChildFund Australia Tuberculosis:
a beginner's guide
"Tuberculosis and HIV are now competing to be Key to the bacteria's devastating success is the ease with the number one cause of death from infectious which it travels. In a contained space the bug might linger disease," according to the latest global figures.¹² for several hours; in fresh air and sunlight it won't last long. Caused by bacteria, it is easily transmitted through In the wrong place at the wrong time – a close room, the spread of airborne germs, most commonly when a store, an aircraft cabin – you can catch it simply by an infected person coughs, talks or sneezes. It is, however, both curable and preventable. Not everyone with TB is infectious. If their disease is extra- Among infants and young children, TB can pulmonary – outside their lungs – they won't spread it. often manifest in deadly or profoundly disabling forms such as TB meningitis.
If they have commenced effective treatment, they also don't pose a contagious risk. Breathing in the bug may not always lead to infection, and not all infected people become sick. An individual's proximity to the diseased person, the length of exposure and their own health status are all variables that determine The ABCs of TB
if they will contract active disease.
If disease progresses – which may take months or years – it will typically affect the lungs, and is characterised by fever, fatigue, a hacking cough and physical wasting. But LATENT TB:
MULTIDRUG-RESISTANT TUBERCULOSIS (MDR-TB):
having entered the body, Mycobacterium tuberculosis can travel through the blood or lymph system to strike This is where an individual is infected but the disease This strain is immune to the two most deployed antibiotics: anywhere, causing swelling and distortion in organs and lies dormant, so they are not contagious and have no Isoniazid and Rifampicin. Treatment typically requires two bones – often showing up in the spine, the belly, the brain. symptoms. The disease can become active later. WHO years of first and second-line drugs. estimates that about one-third of the world's population These latter forms are referred to as disseminated TB, has latent TB.
and children are particularly susceptible. Among infants EXTENSIVELY DRUG-RESISTANT TUBERCULOSIS
and young children, TB can often manifest in deadly or (XDR-TB):
profoundly disabling forms such as TB meningitis, which DRUG-SUSCEPTIBLE OR DRUG-SENSITIVE TB (DS-TB):
affects the brain.¹³ Because the disease can hide in a This strain is immune to the four most powerful drugs young body in so many ways, paediatric cases are often This is a standard form of TB which responds to a used to treat the disease and until recently was a terminal overlooked or misdiagnosed. combination of antibiotic drugs, such as Isoniazid, diagnosis. New, but highly toxic, drug regimens are Rifampicin, Pyrazinamide, Ethambutol and Streptomycin. increasing life expectancy, and clinical trials of the drug Although statistics from WHO show that TB incidence Treatment typically requires six months of daily doses. Bedaquiline¹⁵ are also showing positive results.
and deaths have gradually declined over the past decade, the staggering numbers starkly testify to the bacteria's formidable endurance. The evolution and spread of drug-resistant strains have prompted urgent warnings that TB again looms large as a critical global health threat.¹⁴ Key to the bacteria's devastating success
is the ease with which it travels.

ChildFund Australia Tuberculosis: The cruel scourge for children in Papua New Guinea A DOCTOR'S STORY
Tuberculosis in Papua New Guinea
Dr Henry Welch Dr Henry Welch is paediatrician and senior medical officer at the
Port Moresby General Hospital. An American specialist, he worked with children suffering tuberculosis in Botswana and Ethiopia before coming to PNG in 2013 on secondment from Baylor College of Medicine-Texas Children's Hospital, Texas. Why has tuberculosis found such PNG is wildly beautiful, culturally incomparable and blessed with some of the In PNG, Welch says the infrastructure and public health campaigns are strong, fertile ground in PNG? The seeds richest natural and biological treasures on the planet. It is also economically but still developing. However, the terrain is much more difficult. "The TB is out of the epidemic are in the social, impoverished. Collapsing commodity prices plus volatile political conditions there in the community, but we are waiting for it to come to us," he says. "It's economic and geographical create a deeply challenging landscape for improving the capacity, reach and passive case finding, not active case finding where we would say ‘you have TB, infrastructure required by overburdened health and education programs.
we are going to your house with a healthcare worker, we are going to see who lives in the house and screen them for TB'. And some live with 18,20 people in Health indicators here are poor. PNG ranks 158th out of 188 nations on the UN Human Development Index. The average life expectancy is 53 years, infant mortality is 49 per 1,000 live births, and the maternal mortality rate is one of the Welch says proactive programs are needed to ensure children and family highest in the world at 733 deaths per 100,000 live births.¹⁶ members are tested, diagnosed and treated earlier. Conditions like TB meningitis can quickly leave small children damaged for life. "With TB meningitis, some will Many people live long distances from the nearest functional health facilities which, recover to the point where they can open their eyes, and that is it. Those kids are as a consequence of years of neglect and mismanagement, are often "struggling the toughest to deal with.
against the odds and unable to fulfil basic functions".¹⁷ Doctors are extremely scarce, particularly in rural areas¹⁸, and the health workforce overall is only a "Some kids just don't recover at all. Around 10 to 13 per cent of children admitted fraction of the firepower required to maintain even basic programs. with TB die – that is countrywide." In ChildFund's experience, working in Central Province, health clinics are often of For children who do survive, there are other issues to consider. Two children such sub-standard quality that families can be forced to seek treatment in Port Welch recently admitted to his MDR-TB ward are now doing well, however, Moresby, if they are able to afford the costs of travelling. If not, which is most often they couldn't be sent home straightaway due to multiple MDR-TB cases in their the case, they remain undiagnosed, at risk of infecting other members of their household and other issues in terms of crowding, living standards, access to community, and potentially dying of a treatable disease.
transport and healthy food. He couldn't be sure their treatment would continue. A study by the Burnet Institute¹⁹ in Western Province found almost every hospital Conditions
Despite working in the nation's premier public hospital, Welch is not immune bed taken up by TB; the disease sucking up scarce resources, marginalising other from the notorious dropouts in critical systems and services that blight the PNG urgent health concerns. health network. One of the biggest challenges is lack of human resources: "It not ony affects the health system, but is a cross-cutting issue". For instance, Welch In Daru, much of the overcrowding that is today feeding the TB outbreak is due meningitis
notes that cultures need to be sent to the Mycobacterium Reference Laboratory to the influx of people from drought-affected communities.²⁰ Climate change is in Queensland to be grown in order to make a diagnosis, "but they don't have the expected to have a profound effect on food security and poverty in PNG and other can quickly
capacity to accept all the cultures we need".
vulnerable Pacific nations.²¹ leave small
Despite these challenges, Welch believes PNG will tackle this problem. He With an exploding, and young, population living largely in scattered villages, often mentions that the National Department of Health has made some amazing PNG ranks
not accessible by road, people are increasingly flocking to the cities looking for children
achievements. This includes expanded programs to find TB in the community services or income, and end up in densely packed settlements without water, and the recent construction of a new TB laboratory in which to grow their own 158th out of
sanitation or power. Not only is this spurring an increase in levels of family and cultures. Additionally, they have imported the newest child-friendly TB drugs into sexual violence, but disease continues as an ever-present threat.
the country. "These drugs will really simplify treatment in children, and they have 188 nations on
for life.
had them in the country less than a year after they first become available. PNG is Meanwhile, PNG is experiencing economic stress, intensifying domestic political of the earliest countries to do this, and it's quite remarkable". the UN Human
tensions and civil unrest. There has been international anxiety about the fallout of these issues on containing the TB situation. A flashpoint came in March when According to Welch, the best resources PNG has are its own people. "They know Development
The Lancet Respiratory Medicine published a paper describing the national what they're doing and they're working with partners to meet this challenge and international response to the Daru outbreak in particular as "woefully head on. They just need the political will and support of partners to keep the momentum going." The Western Pacific Regional Green Light Committee, a group of international TB experts supporting the public health response to drug-resistant TB across the Western Pacific, made a series of recommendations after it visited PNG in May 2015, and is due to send its next mission to evaluate progress in August 2016.
ChildFund Australia TB's youngest victims
Tuberculosis remains a major, but often The World Health Organisation²⁴ lists the major reasons unrecognised, cause of disease and death among children in countries where the disease is endemic, like Papua New Guinea.²³ Getting treatment to children in these contexts is stymied by the lack of strategies and tools to guide diagnosis and TB in children is rarely bacteriologically confirmed. As Dr Henry Welch, paediatrician and senior medical officer at Port Moresby General Hospital explains, diagnosis relies on patients coughing up sputum samples – which can be difficult to obtain from a young child. Even if a sample is obtained, it may not show a lot of TB "bugs" even if the disease Children account for 26 per cent of detected TB cases in PNG, although that is likely to be just a fraction of the real story.
Children account for 26 per cent of detected TB cases in Welch adds: "TB is one of those social diseases. The Even when diagnosed, cases are not always PNG²⁵, although this is likely just a fraction of the real story. medicines for TB really aren't that difficult – we've got reported to public health authorities. There are Welch is convinced that malnutrition "absolutely" plays that figured out. But it is really about treating the social discrepancies between the data methodologies. a substantial part in the disease profile. "In PNG, 43 per problems behind the disease … it's a disease of poverty." These factors skew statistics and the imperatives for cent of children are too short, they are stunted, because future programs.
they don't have proper nutrition. That's almost half of the ChildFund's health project coordinator Olive Oa has both population of children." This is supported by UNICEF, which professional and personal experience of the potentially states that malnutrition is the underlying cause for the lethal obstacles facing children with TB in PNG. This majority of deaths of children under the age of five in PNG.²⁶ includes growing evidence of diagnosed and undiagnosed TB in children in the communities she visits in Central Province as part of her work. "Because adults are not getting treatment, you will then In high-burden countries, children get lost under see children with large lymph nodes. The parents think it the weight of adult casualties. Welch explains that is normal until the child starts to lose weight and becomes childhood TB, not just in PNG but worldwide, is In PNG, 43 per cent
tired, then they get diagnosed as having TB." often put on the backburner because from a public health perspective the focus is on controlling TB in of children are
Oa was convinced that a 10-year-old family member adults, because it is they who typically spread TB. had tuberculosis. She told health workers her suspicions, This is despite, as Welch believes, that children are too short, they are
but he was misdiagnosed at two clinics in Port Moresby, most affected by the disease.
stunted, because
and again at a hospital. When a chest X-ray came back clear, she pushed hard for a referral for more tests. Her they don't have
determination meant the boy eventually had a CT scan, and was diagnosed immediately. The TB was in his stomach.
By this time, the boy was gravely ill. But within a week of treatment his health had improved dramatically. "He ate a lot of food. He gained back weight. He took the medicine for nine months," Oa reports. Today he is in his second year at university.
ChildFund Australia Tuberculosis: The cruel scourge for children in Papua New Guinea Calculating the casualties and the cost
Costing a cure
Almost 6.2 million cases – two-thirds of the global Tuberculosis is "rampant" throughout PNG.²⁷ The TB burden – are estimated to occur in the Asia- young nation has amongst the highest prevalence rates AUD$62 (PGK150):
AUD $20,700 (PGK50,000):
Pacific region. But even against the bleak backdrop of tuberculosis in the world: 529 cases per 100,000 of the regional TB story, PNG distinguishes itself for population.²⁸ This figure is regarded as an underestimate, To treat a person with standard TB. Treatment lasts up to To treat a person with XDR-TB. They may be hospitalised all the wrong reasons.
due to the high number of cases that are never detected. six months, mostly at home, but requiring close medical for their entire treatment, which takes place over two years supervision. WHO recommends healthcare professionals or more, if they survive.³⁴ By August 2014, there were about 1,000 new cases of MDR- adopt the DOTS strategy: directly observed treatment, TB being diagnosed in PNG per annum, which on top of the existing burden equates to around 2,000 cases in treatment THESE ARE PHARMACEUTICAL COSTS ONLY:
They do not include remuneration for healthcare staff, AUD $12,420 (PKG30,000):
TB diagnostics, hospital fees and additional health services, The overall prevalence of drug-resistant forms of TB in To treat a person with MDR-TB. Treatment takes place over which form part of a TB treatment program.
PNG is high, but unclear. A recent survey indicated that two years, including up to six months of hospitalisation. the proportion of MDR-TB among new cases was perhaps slightly lower than the regional average.³⁰ However, the latest observation from WHO is that major diagnostic gaps on drug-resistant TB persist in many parts of the world, and are reportedly the worst in the Western Pacific Region, where detected cases represent just 19 per cent of estimated cases.³¹ The cost of inaction will be catastrophic in
The PNG National Department of Health (NDoH) has drafted both a National TB Strategic Plan 2015-2020 terms of lives lost, and astronomical in terms
and an Accelerated Response Plan for drug-resistant TB hotspots. These blueprints have strong endorsement from of financial cost.
international health agencies and program partners. In November 2015 an emergency meeting in Port Moresby on the MDR-TB outbreak in Daru produced a joint statement imploring the PNG Government to release promised funding to allow the crisis to be tackled with "utmost urgency … the cost of inaction will be catastrophic in terms of lives lost, and astronomical in terms of financial cost".³² The 57 signatories included senior PNG health officials, the Australian Government, WHO, Global Fund, World Bank, Burnet Institute, USAID, NGOs and resource companies. To date, only PKG8m (AUD$3.3m) of the emergency response funding has been released – a fraction of what is required. Meanwhile, the PNG NDoH has been hit with heavy budget cuts as a consequence of economic pressures. It is understood that the PNG Government has made a loan request to the World Bank to assist. ChildFund Australia Battling TB:
a view from the frontline
Several international organisations, including With over 20 years of experience working in PNG's ChildFund, have focused their efforts on grassroots rural communities, ChildFund launched the Stop TB in initiatives to help health workers better identify, My LifeTime project in 2013. Working closely with the diagnose, treat and support TB patients.
PNG NDoH, the project aims to increase the capacity of community health workers, improve clinic facilities in rural areas, and raise community awareness and knowledge of the disease. The ChildFund project capitalises on existing relationships and networks, explains Olive Oa. By integrating TB education and awareness into maternal child health and nutrition programs, ChildFund can tackle a range of issues that help identify and prevent TB in children: vaccinations, Village health volunteers can play an important weight checks, dietary information, strategies for avoiding role in identifying TB symptoms, and referring infection, danger signs and disease symptoms, and building potential patients for treatment general household awareness about what to look for and when to seek treatment. Oa and her colleagues instruct health staff on dispensing the latest treatment regimes, new diagnostic techniques and how to identify and seek out potential cases, A key message to communities, says Oa, is that people particularly notoriously under-recognised paediatric cases. should not be afraid of those who are diagnosed with TB. The real danger is from those who are undiagnosed and The program also trains village health volunteers who can Sometimes
then identify symptoms within their communities, and refer potential patients for treatment – an inroad into the kind Oa adds: "Lack of manpower is one of the biggest issues. people who show
of active case finding that many experts say is critical to In some health centres there are one or two staff and they gaining control of TB.
are doing everything." Patients may have to wait hours if symptoms or are
not days to be seen, and this may be after travelling days to Education and awareness at the wider community level is access treatment. diagnosed are
also part of the ChildFund agenda. This recognises that a lack of understanding of disease and how it spreads is often A stronger health network is central to the National TB ostracised from
a powerful impediment to treatment. In many PNG cultures, Strategy and accelerated response plans³⁵ supported by traditional beliefs blaming illness and death on witchcraft WHO, the Australian Department of Foreign Affairs and and sorcery still endure. Trade, Burnet Institute, Médecins Sans Frontières, World Vision and other expert partners. These plans turn on Oa explains: "People have cultural beliefs that delay a lot of increasing its expertise and capacity to diagnose, treat and, presentation to the health facilities." When they eventually ultimately, actively find cases.³⁶ do seek treatment, "the disease is very advanced and they are much weaker". If they are parents, they may have also Recently these efforts gained additional support from infected their children.
USAID, which announced a new program of technical assistance, Bedaquiline for 85 patients and rollout of more Stigma is another obstacle. Sometimes people who show GeneXpert machines for improved diagnosis.³⁷ symptoms or are diagnosed are ostracised from their families, who are unaware that the disease won't spread via eating utensils or body contact, or that once in treatment, they are no longer contagious. ChildFund Australia Tuberculosis: The cruel scourge for children in Papua New Guinea A MOTHER'S STORY
The last word:
In 2013, mother-of-three Ruth developed a chronic cough, fever and aches. She would sit in the sun to try and ease her chills. She tried solutions and recommendations
Panadol and antibiotics, but the sickness grew worse.
"I thought maybe someone was poisoning me, or that someone had put a curse on me," recalls Ruth. Known as the ‘wasting disease' in PNG, traditional beliefs mean many people with tuberculosis blame sorcery.
Unable to care for her children, aged one to five years, their father took over To end the scourge of TB in PNG will require Dr Justin Denholm, infectious diseases specialist and as sole carer and provider. But their eldest boy, Ravu, was so concerned that cooperation, determination and the rollout of founding chair of the Australian Tuberculosis Forum³⁸, says: he stopped attending school, missing his first year of education, to stay at his resources across nations, across agencies, and "What sort of response is necessary? I think all of us want mother's side. "When she wanted water, I would get it for her. I would make tea at all levels of society.
to see PNG and its health care system strengthened and for her and wash my clothes, and my sister would wash her clothes." empowered to be able to effectively manage the terrible situation it finds itself in. Ruth's village is 40 kilometres from the closest health centre in Agevairu. It's a rough dirt track and it takes the local PMV (bus) two hours to make the journey "I think we also have to be realistic about the scale of navigating around the potholes. An adult fare costs twice what many people the problem in PNG and to accept that resources and earn. So mostly, unless they are just too sick to stay on their feet, they walk to infrastructure there are simply not sufficient to do that." the clinic, or don't go at all.
He adds: "TB is an international disease, and it needs an It wasn't until a family member visiting from Port Moresby suggested TB could international solution." be the cause of Ruth's failing health, that she travelled to the clinic for testing. The diagnosis was confirmed. She started feeling better after just a week of treatment. But her problems were not over. "I was always worried that one of my smaller children would catch it, as they were with me so much," she recalls. "But I didn't A strategy to end TB
think it would be my eldest, Ravu, as he is bigger." Ravu began to lose a lot of weight in 2014. He was always tired and very pale and suffered from pains in his chest. "I think he caught TB from either me or my The experts interviewed for this report, consistent The strategy is designed around four principles (see p19), brother, who he sleeps under the same mosquito net with," says Ruth. She sent a with my previous reporting and the international supported by three key pillars: message to the clinic asking for help. A TB officer came to her home, along with literature, confirm the strategies reflected in the a project officer from ChildFund. Ravu was diagnosed with TB and started on ambitions of WHO's End TB Strategy.³⁹ This aims to • Integrated, patient-centred care and prevention: reduce TB deaths globally by 95 per cent, to cut new Early diagnosis through active case-finding; systematic cases by 90 per cent between 2015 and 2035, and to screening of contacts and high-risk groups; treatment of The five-year-old boy is physically recovered now, but his education has a long ensure that no family is burdened with catastrophic all TB patients; prophylactic treatment and vaccination. way to go to catch up lost time.
expenses due to TB. This is an area where NGOs and other community actors can facilitate increased access to services and Note: Name of mother and child changed to protect their identity. • Bold policies and supportive systems. This is where political commitment and resources are imperative - providing universal health coverage, social support and tackling the poverty which drives disease. This can be I thought maybe someone was
assisted by NGO development programs in partnership with communities, churches, other civil society groups poisoning me, or that someone
and health care providers. had put a curse on me.
• Intensified research and innovation. Supporting the discovery, development and rapid uptake of new tools and strategies.
ChildFund Australia Tuberculosis: The cruel scourge for children in Papua New Guinea In the context of Papua New Guinea, additional priority The Global Fund
areas were identified by those experts interviewed for this The Key Principles of
the End TB Strategy
• Strengthening the capacity, infrastructure and resources The Global Fund has been the major international While finance for TB programs has more than doubled of health systems to detect and treat TB patients. This source of funding for TB since it was founded in since 2006, "this is still well short of the global need".⁴¹ includes regular health patrols into remote areas.
2002, investing more than $US4.8 billion in programs To date, the Global Fund has signed off on more than in more than 100 countries, including PNG.⁴⁰ US$45m of TB programs in PNG partnering with the PNG • Training and supporting healthcare workers at all 1. Government stewardship and accountability,
NDoH and NGOs. These programs, some of which are still levels – village health workers, nurses, doctors, health with monitoring and evaluation.
underway, have been part of a ramping up of efforts which has seen the number of smear-positive TB cases leap from 5,000 in 2012 to almost 25,000 in 2015, and reaching • The priority rollout of GeneXpert machines for rapid 2. Strong coalition with civil society organisations
more than 30,000 so far in 2016.⁴² testing and diagnosis, and easy access to second-line and communities.
drugs for treatment of MDR-TB.
However, Global Fund activity in PNG has been hampered by problems with the PNG NDoH's capacity to account for • Moving from passive case finding – waiting for sick 3. Protection and promotion of human rights, ethics
and manage the grants. This has seen the department step people to come through the clinic door – to active case down as principal recipient in TB and malaria programs. finding. This includes screening the family and contacts Oil Search stepped up as principal recipient to keep the of newly diagnosed patients, and where appropriate malaria program running⁴³, and World Vision became the providing prophylactic treatment.
4. Adaptation of the strategy and targets at country
principal recipient for the TB effort.
level, with global collaboration. • Building awareness among communities on disease sources, symptoms to watch for and supporting patients to complete their treatment. This includes tackling Source: www.who.int stigma and sorcery beliefs.
• Alleviating the social and economic conditions perpetuating disease spread – poor housing, broken infrastructure, poor nutrition, lack of access to basic New smear-positive TB cases detected and treated in PNG
At the village level, the urgent and fundamental requirement is for better management and support of individuals affected by TB – patients and their families. Serving vulnerable populations at the community level is also a critical plank of WHO's End TB Strategy.
Source: The Global Fund PNG Results 2008-2016. Tuberculosis: the cruel scourge for children in PNG A PATIENT'S STORY
Grace
Grace is 10 years old, but battling tuberculosis for the second time in her life.
She arrived at a small rural clinic in Central Province so weak and wasted she couldn't walk. "I thought I was going to die," she says. "It was painful and hurt the most in my neck." She had first come to the clinic in the village of Agevairu two years earlier. It's a basic shack, typical of many across PNG; one room with four beds for patients, one treatment room, a delivery room for labouring mothers and a small office. Termites had eaten through some of the walls, which ChildFund arranged to repair.
There are just six staff to provide support for around 15,000 people at Agevairu, some of them travelling six hours by boat for medical attention. As it happened, ChildFund had just been in the area implementing the Stop TB in My Lifetime project. Celestine I'Ova, the Agevairu health officer, diagnosed Grace and started There are currently three TB her on the treatment of tablets she would need to take every day for the next vaccines in advanced trials, and more appearing. She was sent back home, but the written instructions about which tablets and doses to take were lost. "I was worried about overdosing her by giving her too much medicine," her mother, Lani, explains. "And Grace seemed better." She stopped taking her treatment.
Medical research and development
This is a common story. TB drugs can have a miraculous effect on how people I was worried
feel, but unless they are taken for the full duration, they won't provide a cure. Worse, they give the TB bug the chance to fight back and progress into a drug- Australia could potentially play a powerful "Australia has significant research and industry capability resistant form of the disease. role in regard to the third pillar of the End TB that could be brought to bear on finding new tools like Strategy – stoking the machinery of medical and vaccines and new drugs that could help countries like PNG A few months later, Grace was sicker than ever. "First we went to another health pharmacological research to come up with better with TB control and ultimately eliminate TB as a public overdosing
centre. The staff there said she didn't have TB," Lani says. "They referred us to the instruments to tackle this modern plague.
health risk," says Denholm.
her by giving
hospital in Port Moresby where they did a biopsy of her gland in her neck. Internationally there is mounting pressure to find a modern, "We waited and waited for the results, but eventually ran out of money, so we more effective successor to the 95-year-old BCG (Bacillus her too much
had to return home without them. We have no relatives in Port Moresby and it Calmette–Guérin) vaccine for TB. While it is effective in was very expensive." children who receive it (88 per cent coverage in PNG⁴⁴) it does not provide effective protection for adults, and they This, too, is an all-too-common tale. The vast majority of the population live are the ones who spread the disease.
TB is an international
in rural areas and survive on what they grow in their gardens. If they have to leave their land to access health services, they don't have the means to support There are currently three TB vaccines in advanced trials, and disease, and it needs an
themselves, and must rely on wantoks (relatives) for food and accommodation. there are more appearing in the early stages of the pipeline. The Bill and Melinda Gates Foundation's deputy director for Fortunately when Lani took Grace back to the Agevairu clinic, I'Ova was able TB Willem Hanekom said at the AIDS 2016 conference that to track down the missing results in Port Moresby. They were positive for TB, there were now seven novel ideas being tested in the TB so treatment began again, but this time a much stronger course of medicine vaccine field.⁴⁵ was required.
There are also new developments in the pipeline specifically ChildFund has recently supplied the clinic with a microscope to analyse sputum geared to improving TB prevention, diagnosis and treatment samples. This simple piece of equipment is saving lives, says I'Ova, because people in children. Studies underway, or due to start soon, include who don't have the time or means to get to Port Moresby for testing are coming evaluating preventative therapy for children exposed to to her clinic. "I always give priority to TB patients," she says. "They are never turned MDR-TB, and for shortening the treatment regime for away, even if we need to have people sleeping on the porch outside." children with less severe forms of drug-sensitive TB.⁴⁶ Note: Name of mother and child changed to protect their identity. ChildFund Australia Tuberculosis: The cruel scourge for children in Papua New Guinea 1 World Health Organisation (WHO) Global Tuberculosis Report 2015. www.who.
²⁷ WHO Joint External Review of the National Tuberculosis Programme of Papua New Guinea 7-21 February 2014. www.wpro.who.int/papuanewguinea/mediacentre/who_review_tb_program/en/ 2 WHO Joint External Review of the National Tuberculosis Programme of Papua New Guinea 7-21 February 2014. www.wpro.who.int/papuanewguinea/ ²⁸ WHO Papua New Guinea Tuberculosis Profile. https://extranet.who.int/ 3 WHO Papua New Guinea Tuberculosis Profile. https://extranet.who.int/sree/Reports?op=Replet&name=/WHO_HQ_Reports/G2/PROD/EXT ²⁹ MDR/XDR-TB Emergency Response Team Annual Report August 2014-August 2015, National Department of Health, PNG.
4 MDR/XDR Emergency Response Team Annual Report (September 2014-August ³⁰ WHO Papua New Guinea Tuberculosis Profile. https://extranet.who.int/ 2015), PNG National Department of Health.
5 TBFacts.org: TB & Children – Getting, diagnosing & preventing TB. www.tbfacts.
org/tb-children/ ³¹ World Health Organisation (WHO) Global Tuberculosis Report 2015. www.who.
int/tb/publications/global_report/en/ 6 WHO Global Tuberculosis Report 2015. www.who.int/tb/publications/global_report/en/ ³² Joint statement from the Meeting on the Multi Drug-Resistant-TB Outbreak in Daru. www.burnet.edu.au/system/asset/file/2033/Joint_Statement_TB- 7 WHO Multidrug-resistant tuberculosis (MDR-TB) 2015 Update. www.who.int/tb/ ³³ WHO: The five elements of DOTS. www.who.int/tb/dots/whatisdots/en/ 8 Outbreak of multidrug-resistant tuberculosis on Daru Island, The Lancet Respiratory Medicine. www.thelancet.com/journals/lanres/article/PIIS2213- ³⁴ Annual Report of the PNG National Department of Health DR-TB Emergency Response Team (August 2014-August 2015).
9 Joint statement from the Meeting on the Multi Drug-Resistant-TB Outbreak ³⁵ Stop TB Partnership. www.stoptb.org/wg/mdrtb/ ³⁶ ABC Radio National: Ebola with wings: the TB crisis on our doorstop. www.abc.
net.au/radionational/programs/backgroundbriefing/2016-04-17/7326118 ³⁷ USAID to Provide Technical Assistance to Detect and Treat Multidrug-Resistant TB in PNG. www.onepng.com/2016/06/usaid-to-provide-technical-assistance.
¹¹ International Journal of Infectious Diseases: Tuberculosis and HIV co- infection-focus on the Asia-Pacific region. www.ijidonline.com/article/S1201-9712(14)01712-3/abstract ³⁸ The Tuberculosis Centre of Reseach Excellence. http://tbcre.org.au/australian-tb-forum/ ¹² World Health Organisation (WHO) Global Tuberculosis Report 2015. www.who.
int/tb/publications/global_report/en/ ³⁹ WHO End TB Strategy. www.who.int/tb/post2015_strategy/en/ ¹³ Centers for Disease Control and Prevention. www.cdc.gov/tb/topic/ 4⁰ The Global Fund: PNG country overview. www.theglobalfund.org/en/portfolio/ ¹⁴ Reuters news article: Drug-resistant tuberculosis at crisis levels, warns WHO. 4¹ The Global Fund: TB factsheets. www.theglobalfund.org/en/newsroom/ Author: Jo Chandler Editor: Larissa Tuohy ¹⁵ International Journal of Basic & Clinical Pharmacology: Bedaquiline - a new ² The Global Fund: PNG country overview. www.theglobalfund.org/en/portfolio/ weapon against MDR and XDR-TBwww.scopemed.org/?mno=31883 Designer: Spade & Arrow ¹⁶ WHO PNG country profile. www.wpro.who.int/countries/png/en/ 4³ Aidspan: Principal Recipient for Papua New Guinea Grants Resigns. www.
aidspan.org/gfo_article/principal-recipient-papua-new-guinea-grants-resigns Photography: Vlad Sokhin, Jason South/Fairfax Syndication ¹⁷ Development Policy Centre: A lost decade? Service delivery and reforms in Papua New Guinea 2002-2012. http://devpolicy.org/publications/reports/PEPE/ ⁴⁴ UNICEF State of the World's Children 2015. www.data.unicef.org/resources/ (page 6), Cam Suttie, ChildFund staff ¹⁸ Health Service Delivery Profile: Papua New Guinea 2012. www.wpro.who.int/ ⁴⁵ Bioworld: TB is getting attention; will new vaccines, drugs follow? www.
ChildFund Australia, August 2016 ¹⁹ Evaluation of Risks of Tuberculosis in Western Province Papua New Guinea. ⁴⁶ Treatment Action Group Pipeline Report. www.treatmentactiongroup.org/ ²⁰ ABC Radio National: Ebola with wings: the TB crisis on our doorstop. www.abc.
net.au/radionational/programs/backgroundbriefing/2016-04-17/7326118 ²² Outbreak of multidrug-resistant tuberculosis on Daru Island, The Lancet Respiratory Medicine. www.thelancet.com/journals/lanres/article/PIIS2213-2600(16)00101-6/abstract ²³ The New England Journal of Medicine: Tuberculosis in children. http://www.
nejm.org/doi/full/10.1056/NEJMra1008049 ChildFund Australia ²⁴ WHO Global Tuberculosis Report 2015. www.who.int/tb/publications/global_ ChildFund Papua New Guinea Address: 162 Goulburn Street, Surry Hills NSW 2010 Address: PO Box 671, Gordons NCD, Papua New Guinea ²⁵ MDR/XDR Emergency Response Team Annual Report (September 2014-August 2015), National Department of Health, PNG.
Phone: 1800 023 600 Phone: (675) 323 2544 ²⁶ UNICEF: Malnutrition - a silent emergency in Papua New Guinea. www.unicef.
org/png/media_22749.html Email: [email protected] ABN: 79 002 885 761

Source: https://www.childfund.org.au/sites/default/files/publications/Tuberculosis-%20the%20cruel%20scourge%20for%20children%20in%20PNG%20FINAL.pdf