Battling a forgotten disease in remote Papua New Guinea

Imagine if someone you love is sick. Now imagine they are infected with a disease that you thought was long gone. They live beside a river with no access to a major road and transport is unpredictable at the best of times.

Sounds like a nightmare.

For some people this is their reality.

The tropical splendour of Papua New Guinea, from the volcanic mountainous highlands through to large river deltas and rainforests, can dazzle visitors with its beauty while masking the difficulties locals face in accessing healthcare.

While some urban drift towards the capital, Port Moresby, has occurred, more than 80 per cent of the country’s 7 million people live in rural areas. Only 35 per cent of people live within 10km of a major road and 17 per cent have no links to road infrastructure at all. On top of this, many diseases that are almost forgotten in developed countries have a devastating impact on PNG.

James Cook University PhD student Tanya Diefenbach-Elstob is researching how one of these diseases, tuberculosis (TB), is affecting the local population and how diagnosis and treatment can be improved.

PNG has one of the highest infection rates of TB in the world.

TB is an infectious disease caused by the bacteria Mycobacterium tuberculosis. The disease is contagious and airborne, spread through coughing and sneezing. Symptoms of active TB can include a chronic cough with blood-containing sputum, fever, night sweats and weight loss. Not undergoing or completing treatment can result in life-threatening complications and death.

Far away from bright city lights and the comforts of the developed world, Tanya has been interviewing TB patients to uncover what factors influence them in continuing with their TB treatments. Her research is focused on the Balimo district of Western Province, a remote region of PNG. Up to 4000 people live in the town of Balimo, which has two hospitals but no physician.

Balimo, which serves as the urban centre for surrounding villages, can seem a world away from Australia. Most of the local population are engaged in subsistence agriculture and travel is usually by dugout canoe. Tanya has already visited Balimo once this year and plans to go again soon.

“Access to care can be difficult for many people,” Tanya says. “There are no roads outside of the town centre, they travel in canoes to the town. We are examining how far they need to travel, whether they have the funds to travel to and how long it might take to seek out care.”

PNG locals and researchers sit on the floor of a building to talk

Conducting interviews in a village church. Photo: Supplied.

Limited access to reliable transport poses an extra challenge for people needing to access TB treatment. Standard management of TB in the region is based on the Directly Observed Treatment, Short-course (DOTS) strategy, which means infectious patients should be admitted to the hospital TB ward for two weeks or until considered non-infectious.

However in a town of limited resources, including hospital beds, a pragmatic and flexible strategy is needed. Some patients stay around Balimo during treatment and go to the hospital daily for observation, while others return home where a family member or treatment supporter help them with their treatment.

Many factors can come into play when it comes to adhering to TB treatment. In a subsistence-based population, the need to continuously produce enough food to provide for a family can compete with the need to undergo treatment. In such a lifestyle, spending what little money there is on motorized transport is a luxury and leaving home for treatment can exacerbate the financial strain on families.

Tanya has sifted through and analysed years of data on TB patients to investigate the distribution of the disease and discover trends.

“This involved looking at what groups of people were affected, whether there were more males or females, or more in a particular age group and other trends,” she says. “We also looked at patient geography and mapped where the patients are located. We found where they are clustered and looked at settings where there were an unusually high or low number of cases.

“We are really trying to understand how people are living, where they are located, what the influences are, how they might get TB, and how they access care.”

Tanya hopes her research will benefit the local community and their TB control program. She said a highlight of her work in Balimo has been integrating her research with local programs and forming partnerships with local healthcare workers.

Healthcare workers in PNG hold sign saying "We are the Tropics"

Balimo health workers during 2016 International Day of the Tropics. Photo: Supplied.

“One of the most valuable things for me has been working with the local health workers in PNG,” she says. “The health workers understand this region and the difficulties. I’ve learnt so much from their insights and the everyday challenges. We work collaboratively with them and it is important that the research outcomes from my work are valuable and useful for the local community.”

Networking and collaboration are ongoing themes in this work. Tanya’s research builds on years of collaboration with health workers in Balimo, extending from networks established in the region more than 20 years ago by her primary research advisor, JCU A/Prof Jeffrey Warner.

While there is no easy way to solve the many problems patients face when trying to access healthcare in such a remote environment, Tanya’s research has found some ways the situation could be improved.

Community plays an important role in PNG society and increasing the involvement of networks and churches could benefit TB services in the region. Her research also found that increased educational services about the disease and the use of personal testimonies from cured patients could improve the DOTS strategy in Balimo.

Working in such a remote location has not been without significant challenges. Power outages meant that sometimes the only option was to cook over a kerosene stove by torchlight. Access to clean drinking water also became a priority; a factor that is especially important during dry season when fresh rainwater may be unavailable. The unpredictable power supply affected the ability to boil water, and limited water storage options meant that it was not always possible to store enough boiled drinking water.

“We understood that fieldwork challenges are the same ones that influence the lives of the people here every day,” Tanya says. “We needed to consider that in health service delivery.”

Tanya, who has a background in biomedical science and public health, also researches the molecular epidemiology of tuberculosis. A deep interest in tropical infections is what inspired her to work in Balimo.

“I was very interested in tropical infections and looking at how we can have good health for everyone, particularly looking at improving health for people who live in a resource-limited setting,” she says. “Epidemiology uses a broad range of skills and I really would love to continue doing very similar work in the future about how and why tropical diseases occur.”

If you are interested in supporting community health workers based at Balimo Hospital, you can contribute to the Balimo PNG Health Worker Support Fund. Money raised through this fund will contribute to health-related consumables and equipment, and costs associated with health workers undertaking higher education.

JCU has one of the largest postgraduate public health training programs in Australia. The College of Public Health, Medical & Veterinary Sciences offers training programs that not only cover the core public health competencies, but also offer a particular focus on the challenges facing health professionals working in tropical, rural and remote environments.

Cover image: Supplied.