Visceral leishmaniasis (VL) is a parasitic disease characterized by bouts of fever, weight loss, swelling of the spleen and liver and anaemia. If left untreated, it is almost always fatal.
Spread by the bite of an infected sandfly, VL (known as kala-azar in South Asia and East Africa) typically affects the poorest, most marginalized people, who often live in remote communities with limited access to health facilities.
The KalaCORE programme is an initiative to reduce the health and economic impact of VL. It is funded by UK aid. The programme supports governments in East Africa in controlling the disease and governments in South Asia in eliminating it.
Active case detection in areas with high case loads of VL is an essential component of the elimination strategy in India. In Bihar – chosen because of high case loads of VL in previous years, sessions were held with community members to raise their awareness of the disease and help them to understand the causes and how to prevent it.
Eight-year-old orphan Sita Kumari had had fever for over a month. She lived with her aunt and her brother, who worked as a labourer, making just enough money to meet the basic needs of the family. However, he was struggling to cover the cost of local doctors, who had treated her without success.
Sita and her remaining family are part of the mallah (boatman) caste, a marginalized group at the very bottom of the community social structure. Over 70% of VL patients in Bihar live in households below the poverty line India VL patient baseline preliminary results, 2016, KalaCORE programme.. It is a disease of the poor.
Active case detection in areas with high case loads of VL is an essential component of the elimination strategy in India.
Sita’s aunt told the session facilitator about her niece. The facilitator told the aunt about the free 1-day treatment available for VL patients in government hospitals. The aunt took Sita to Sadar Hospital, where she was treated with donated AmBisome®.
As part of the government initiative, VL patients and their caregivers are compensated for any loss of wages during the illness and for additional expenses such as transport, food and any other medical fees.
A few days later, Sita’s brother received a cheque for RS 6,600, and he received a further RS 500 on completion of her treatment.
As part of the government initiative, VL patients and their caregivers are compensated for any loss of wages during the illness and for additional expenses.
Sita made a full recovery. She enjoys playing a local game called kit-kit with her friends and occasionally watches TV at her uncle’s house. Her family are now aware of the symptoms of VL and encourage others in the village to seek treatment at government clinics.
Sita encountered a number of barriers to being cured, from an incorrect diagnosis to the financial burden, which prevented her from receiving the right treatment right away. Her story is not unique. In India, patients and families affected by the disease can become poorer due to the financial cost of the illness, which has been shown to exceed 14% of the total annual household expenditure. In Bihar alone, over 70% of VL patients lose income due to the disease, and almost 80% have had to borrow money to meet the cost of treatment.
In Bangladesh, Ethiopia, India, Nepal, South Sudan and Sudan – the countries that have the highest burden of the disease globally – the KalaCORE programme is supporting improved access to prompt diagnosis and effective treatment for VL. The programme trains health workers and ensures that health centres are equipped with the appropriate drugs and testing kits. Hard-to-reach communities are provided with information and education to encourage health-seeking behaviour. KalaCORE is also strengthening national surveillance systems and vector control for protection against the sandflies.
This is part of Reaching a Billion, the fifth progress report of the London Declaration on NTDs. Read the full report.