Munni* was in sixth grade when she first noticed the unusual reddish bumps on her face. She didn’t pay attention to them for weeks. But then her mother noticed them multiply.
She soon started to experience fatigue and a fever and went to a local chemist in her small village of Anandpur Kharauni in Bihar, a northeastern Indian state bordering Nepal and a stone’s throw from Bangladesh . She took medication for several weeks, but neither the bumps went away nor her fatigue. Tired and hopeless, her parents took her to a private doctor who advised her to undergo testing.
The results were shocking: Munni had tested positive for Visceral Leishmaniasis (VL), also known as black fever or kala-azar in the local language.
VL is a neglected tropical disease caused by the parasite Leishmania, with most cases occurring in Brazil, India and east Africa. This parasite enters the body typically through sandfly bites and attacks internal organs such as the spleen, liver and bone marrow. If left untreated, it is almost always deadly. Patients experience severe anemia as well as common illnesses like pneumonia due to being immunocompromised by the parasite.
According to the World Health Organization, an estimated 50,000 to 90,000 people become afflicted with VL every year. But these numbers are increasing due to rising global temperatures and shifting rainfall patterns as a result of climate change, which is creating more favorable circumstances for disease vectors such as the sandfly.
For many months, Munni was unaware how she got infected because she hadn’t travelled anywhere. She received her initial treatment at a primary health centre in Paroo, a town in the Muzaffarpur district of Bihar. In 2021, she got post-Kala Azar Dermal Leishmaniasis, a late cutaneous manifestation of VL, which usually appears after the illness seems to have healed in the form of lesions. These lesions resemble deformed, bloated structures similar to those caused by leprosy. In rare instances, they may cause blindness if they get too close to the eyes.
In 2022, Munni relapsed with VL.
“I hate to see my face in the mirror. I don’t like to go to study or go to school. All I want to do is lay down all the time,” she said.
All these years of living with the disease has taken a toll on her. Her weight has dropped due to the frequent fevers that result in no appetite. She spends her days mostly lying in bed.
“Many villagers have used rude language against my illness and saw me as worthless and a bad omen for my family. They had no idea of how hurtful it is,” she said.
As of now, Munni has become infected thrice with the parasite Leishmania, but she still doesn’t know much about the disease.
Due to lack of specialized care in rural parts of India, VL has frequently been misdiagnosed as other diseases such as malaria. Patients on the margins like Munni lack enough resources for a protracted course of care. As a result, they suffer from a poor quality of life: Munni is forced to miss school regularly and experiences social stigmatization while her parents struggle to keep their jobs due to the burden of care.
“Girls here in villages are considered a burden and this disease has made things worse for them,” she said. “This disease is now a part of my identity.”
How climate change aggravates spread of vector-borne diseases
Climate change is making conditions for these vectors even more favorable with rising temperatures and erratic rainfall patterns, which means the disease has potential to spread even faster than before, according to Bhupendra Tripathi, an infectious disease expert at the Bill and Melinda Gates Foundation.
"It makes the fight against Leishmaniasis even more important as it will cause it to spread globally,” he said.
A 2021 study shows that higher annual temperatures can increase the risk for VL, especially in low-income, disadvantaged districts that lack adequate infrastructure.
India’s record-breaking heat wave, which lasted from March to June 2024, killed at least 100 people and hospitalized around 40,000 for heat stroke. In May, the country experienced record-breaking temperatures of 52.3°C (126°F), resulting in nearly 19,000 instances of heat stroke.
A 2023 study attempted to study the intersection between climate change vulnerabilities and VL outbreaks in India, and found that the northwestern parts of the state of Bihar would be affected the most by these changes. India reports about two-thirds of all VL cases in Asia, with the state of Bihar accounting for over 50% of the cases in India.
Risks for VL transmission were found to be significant year round — except for Indian winters from December to January — due to the incidence of monsoons as well as peak months for sand flies proliferation.
Many vectors are already expanding their geographical span as well as the duration of their active season due to warming climate. Research published in the journal PLOS said 90% of Indians are now more vulnerable to vector-borne illness, low crop yields, and income loss as a result of the country’s two years of record-breaking hot waves.
A 2021 UNICEF report declares that “the climate crisis is a child rights crisis,” analysing the risks to a child’s life due to climate impacts such as lack of clean water and healthcare, and climatic and environmental hazards.
In Bihar, poverty has always remained a key factor that impedes attempts to develop and finance long-term healthcare initiatives that can protect children from diseases.
“It’s going to take everybody to completely eliminate the disease as well as sustain it,” said Shyam Sundar, founder of Kala Azar Medical Research Centre, a non-governmental organization in Muzaffarpur, Bihar, offering free care including diagnosis and treatment for this disease.
Finding solutions to a growing problem
After being misdiagnosed with typhoid fever, 18-year old Nitin* was finally diagnosed with VL in 2021. At the time, he had no knowledge about the disease. Visits to private doctors consumed most of the family’s income and he had to skip school due to the high fever and fatigue that hit him every two to three weeks, which means his mother had to stay home to take care of him.
“It’s been months since I tested negative, but it doesn’t feel like it’s ended,” Nitin said. “The disease made me sick all the time and I became hopeless.”
India’s strategy to eliminate VL aligns with the WHO’s roadmap to eradicate neglected tropical diseases by 2030. As a result, the number of VL cases in India has reduced by 94% since 2014.
But, the people from low-income communities like Munni and Nitin continue to be affected by the disease, which traps families like theirs in vicious cycles of poverty.
Scientists across the world are working hard to find new treatments for the illness. Treatments such as the AmBisome injection and the oral miltefosine treatment have helped decrease the number of active cases of the disease.
“We try our best that the patients shouldn’t drop treatment midway. But, unfortunately these things are quite common and that is largely responsible for promoting drug resistance,” Sundar said.
The persistence of asymptomatic leishmanial infection and the significant numbers of post-Kala Azar Dermal Leishmaniasis cases (which occurs as a late-stage complication of VL) threaten to endanger the post-elimination phase’s maintenance, according to a study.
“However, we must not grow complacent, because it may come back,” Tripathi said. “This entails keeping an eye out for new instances, applying indoor residual spraying diligently, and funding creative research to further our knowledge of the illness and provide safer, more potent treatments.”
The Indian government has launched the Kala-Azar Management Information System, a new online real-time data system that has enabled health authorities to identify potential hotspots and engage additional surveillance and community engagement efforts in the affected areas.
But such efforts have been stymied by cost and regulatory hurdles. Although children are often more vulnerable to illness and mortality from infectious diseases, many become crippled or die due to a lack of proper paediatric treatments.
According to Kavita Singh, South Asia director at the Drugs for Neglected Diseases Initiative, researchers are trying to simplify existing treatments and conduct additional trials for an oral treatment for VL, which can help revolutionize current treatment methods and solve a public health crisis.
“Over these years, we have seen that the VL patients and also HIV-positive individuals who have relapsed, may serve as a large reservoir for transmission,” Singh said. “There is a need for sustained efforts for the disease elimination in terms of research and development to create novel treatments and quick diagnostic procedures.”
Until more readily available cures for VL are found, youth like Munni and Nitin as well as their families will continue to suffer from the disease and the associated social stigmatization.
“My friends talk about their future and what they want to do with their lives, but I can’t,” Nitin said. “There is no awareness. Only those who go through this, realize how important it is to be careful so that the disease doesn’t come again and how hurting and devastating it is for the entire family in multiple ways.”
Editor's note: The names marked with * in the story have been changed to protect sources' privacy.
October 15th UPDATE: A quote from Dr. Kavita Singh has been corrected.
