The Long and winding road to diagnosis

Ramesh lives in a small village in the rural area of Bardiya district in Nepal. He was a worker in a brick factory and was his family’s sole financial provider when he fell ill. He had a fever and chronic cough, which are very common in the areas where he lives, so Ramesh hoped his symptoms would soon go away and continued to work.

When Ramesh realized he was getting sicker, he first visited a local pharmacy and took the pills suggested, but the drugs didn’t work. It was the beginning of a long journey to diagnosis. Over the next three months, Ramesh visited 12 different pharmacies and spent more than his monthly income for different tests, medicines and transportation to health centers.

Ramesh was hopeless, unemployed and facing severe financial constraints when our Female Community Health Volunteer, Sarita Thakuri, found him and recognized his symptoms. She helped him to get tested for tuberculosis (TB) and checked his family members for symptoms of TB.

When Ramesh finally had a diagnosis for TB, Sarita was able to help him get effective treatment. By checking the people who had been in contact with him, Sarita was also able to make sure anyone else infected got early diagnosis and treatment and did not suffer the same traumatic search for a diagnosis. This active case finding (ACF) strategy can help to find people with TB living in communities and assist them to get treatment faster.

Birat Nepal Medical Trust (BNMT)

Why do people suffer high financial burden of TB illness despite free diagnosis and treatment?

TB is the deadliest infectious disease in the world. The poorest members of our communities are more vulnerable to falling sick and have the least resources to cope with TB. Families surviving on the edge can quickly spiral into extreme poverty when an essential income earner falls sick. This is often due to the sale of essential assets, losing a job or taking out loans from predatory money-lenders.

The poorest members of our communities are more vulnerable to falling sick and have the least resources to cope with TB

Costs known as out of pocket expenses, such as paying for transportation to health centers, medications and tests, can also cause a heavy burden on the fragile family income. TB patients often work in the informal sector and lose income due to inability to work, particularly in manual labor jobs such as Ramesh’s job.

When more than 20% of the annual household income is invested in TB diagnosis and care, patients are deemed to incur “catastrophic costs”. Above this threshold patients are less likely to be successfully cured and have higher risk of death, treatment abandonment or failure.

In order to reduce the economic and epidemiological impact of TB, the World Health Organization (WHO) launched the END TB strategy in 2015, establishing ambitious milestones to reach a World Free of TB. One of these milestones is to reduce to zero the number of TB-affected households suffering from catastrophic costs by 2020.

Moving towards solutions for Nepal

Although the world is making great strides to reach the sustainable development goals in reducing poverty and hunger and providing good health and well-being, people affected by TB are still left behind.

Understanding the distribution of costs incurred by people suffering from TB is important for the policy makers to design optimized intervention packages. Therefore, Birat Nepal Medical Trust, a Nepalese non-governmental organization, was supported by the Stop TB Partnership in 2017 to implement the TB REACH wave 5 project aiming to increase TB case detection and assess the potential of ACF in reducing patient costs.

The study showed that over 50% of the TB affected families faced catastrophic costs. This high prevalence of catastrophic costs is similar to other low and middle-income countries. However, the finding that ACF has a substantial impact in reducing pre-treatment costs provides an important indication of the way forward to eliminate this suffering.

By increasing active TB case finding coverage in Nepal and other countries of the region, we can substantially reduce the number of families facing catastrophic costs and thereby support these families to recover from the consequences of illness.

Active case finding alone will not be enough to eliminate catastrophic costs for TB, but it is a vital piece of the jigsaw. If we combine improved patient-centric interventions for TB with increased socio-economic support strategies, how many families like Ramesh’s can we save from spiraling into extreme poverty?

For far too long, we have ignored the financial consequences of TB for affected families, but with the evidence of both the suffering and how to provide effective solutions, policy makers can no longer be complacent. The time to act to end catastrophic costs is now. We have the evidence and need to ensure that we have sustained political commitment from our leaders to END TB.

Birat Nepal Medical Trust (BNMT)