Breaking the Silence on Tuberculosis Saves Lives

Read related story "Why no parent wants TB to coming knocking at their door"

World Vision TB Coordinator Valda Kereu, 32, was a hospital resident health extension officer when she contracted TB in 2008.

“I lost a lot of weight, had night sweats, and was too breathless to lie flat in bed. Even walking short distance was a difficult task for me because I was always out of breath,” she recalled.

When tests confirmed that she had TB, her initial reaction was devastation, “I wept. I gave up hope of living and felt so alone and empty,” she said.

But after the initial shock, as a health worker, she knew TB can be cured as long as she completed her medication. “The drugs made me hungry so I ate a lot since having something in my stomach made the nausea less and made it easier for me to comply. The side effect from the drugs meant that I also suffered from constant joint pains and swollen joints. These however were minor problems and I was more than determined to complete my medication to get well,” Valda said.

Unlike Valda, not everyone with TB is able to complete their treatment.

“A person living with TB should be treated with the same respect and dignity as any other human being." Heather MacLeod, World Vision PNG Country Program Director

In Papua New Guinea, around 20 per cent of people diagnosed with TB do not persist with their medication. Interrupted treatment can lead to drug resistance and more people getting severely ill and dying of TB.

In 2015, seven out of 10 people diagnosed with TB belong to the15 to 45 per cent age group and lived in urban areas where there is higher concentration of people residing in crowded settlements. Moreover, 26 per cent of people with TB were children who likely got the disease from adult members within the family or community. Multi-drug resistant TB is also an emerging concern.

“Spreading facts instead of misconceptions about TB can save lives. If more people understand that TB is treatable and curable, then there is no reason for people with TB to feel isolated or feel ashamed.” Dr Paison Dakulala, Deputy Secretary of the National Department of Health

A widely-known disease, there are still persistent misconceptions, fear, and shame surrounding TB that pose major barriers to health seeking behaviours for early diagnosis, effective treatment and care of people living with TB. Misinformation that TB is caused by sorcery and that it can be transferred by sharing utensils, clothes, and other items abound. Delay in seeking care can kill people with TB before they’ve reached a health centre, infecting more people, especially loved ones, in the process.  

“When I learned I had TB, I felt afraid and ashamed,” shared Anna Mora, 23. “For me, the fear of being shunned by my family and of living alone forever was greater than the fear of dying,” Anna said.

Anna’s mother, Jennifer Sareapo, 38, urged her to have herself checked for TB seeing that Anna exhibited symptoms of the disease. A TB treatment volunteer for three years with nearly 50 TB patients supported, Jennifer knew how to guide Anna on her journey back to health. This was made easier by the fact that TB testing and TB drugs are free in government health clinics in Papua New Guinea.  

“I wouldn’t have completed my treatment without my mother’s care. My husband and my daughter were very supportive as well,” said Anna. Six months after starting her TB medication, Anna received good news that she was cured of TB.

For Bola Kuluka, 25, sticking to her treatment was a struggle. She would miss collecting her TB drugs and would miss taking them because she didn’t want to spend time away from work. Soon she was too weak and sick that she had to quit her job. Diagnosed with drug-resistant TB, she was confined at the Port Moresby Hospital where she received proper care and treatment, including nutritional support to nourish her body.

“With doctors’ care I was able to claim my life back,” Bola beamed while holding her 10 month old baby girl who also completed TB preventive therapy. She now looks forward to getting herself a job so she could provide for her family’s needs.

Compassionate and consistent care and support from family members, communities, even workplaces, anchored around a strong partnership with health facilities, enable early detection of the disease and can help people start the correct treatment without delay. Most especially, it can spell a big difference in a TB patient’s adherence to treatment.   

With support from World Vision Papua New Guinea and World Health Organization, and funding from The Global Fund, the Australian Government, and World Vision Australia, the National Tuberculosis Program of the National Department of Health is reinvigorating its TB treatment volunteers program to empower families and communities affected by TB gain a more significant footing in the fight against the disease.

“Spreading facts instead of misconceptions about TB can save lives,” Dr Paison Dakulala, Deputy Secretary of the National Department of Health, said. “If more people understand that TB is treatable and curable, then there is no reason for people with TB to feel isolated or feel ashamed,” he said.

Dr Dakulala stressed that in PNG, people have a strong sense of “wantok” and taking care of family members is a strongly held value. “We should harness this value to quash stigma and discrimination,” he said. “Family members, health workers and volunteers, faith-based organizations, and other community-based organizations can help through simple and correct knowledge about TB,” he added.

“Having TB does not mean that the person has done something bad or wrong,” Heather MacLeod, Country Program Director of World Vision, said. “A person living with TB should be treated with the same respect and dignity as any other human being deserves,” she added.

Dr Dakulala said that community-based organizations can help ensure that all people living with TB have access to directly observed treatment or DOT which is the World Health Organization’s recommended strategy for curing TB. It requires a trained health worker or volunteer to give the prescribed TB drugs and watch while the patient swallows every dose.

 Aside from public education and DOT, community-based organizations can help amplify the voices of people living with and affected by TB.

 “People living with TB and their families, including children, need to have a platform to freely air their needs and concerns. By starting a dialogue with them, all partners in the fight against TB will be in a better position to identify what needs to improve and how,” Heather said.

"We are ready to listen and learn from the communities," said Dr Dakulala. He said that a series of consultations will be held on the first week of April 2017 with various community-based organizations and groups affected by TB. This is in collaboration with World Vision, World Health Organization, and other partners working on the ground.