The health crises of forgotten people: Five stories from 2016

In August 2016, the searing image of Dana Majhi of Kalahandi, Odisha carrying his wife’s dead body on his shoulder went viral. Mahji, a daily wage labourer, carried the body for nearly 12 kilometers accompanied by his weeping daughter after failing to get a mortuary van from a district hospital. Majhi’s story opened the floodgates for a number of other stories arising out of the pathetic state of health infrastructure in rural Odisha and many other parts of the country to be reported – for a few weeks.

This unfortunate story of people, and sometimes whole communities, being ignored or forgotten until they are in a medical emergency, dying or dead, repeats itself across India. Since its launch in July this year, Scroll.in’s Pulse section has been checking up on the health crises of communities ignored or isolated due to geography or socio-economic reasons. Here is a shortlist of five of our ground reports from Malkangiri in Odisha to Poonch in Jammu and Kashmir to Wayanad in Kerala.

Japanese encephalitis ravages Malkangiri

Between September and November, 93 children admitted to the district hospital in Odisha’s remote Malkangiri district died of encephalitis. Blood tests confirmed that 32 of the deaths were caused by the Japanese encephalitis virus.

In India, the Japanese encephalitis virus is responsible for most cases of Acute Encephalitis Syndrome, colloquially called brain fever. Those infected with the mosquito-borne virus have inflammation of the brain, which results in fever, headaches, seizures, disorientation and vomiting. The condition can rapidly cause death.

In November, Scroll.in reporter Priyanka Vora travelled Malkangiri, the southernmost district of Odisha and also one of the poorest. Spread over 5,971 sq kms, Malkangiri is home to 660,000 people but has only just one large government hospital with only nine doctors.

The Japanese encephalitis outbreak and fatalities were in no small part due to government officials vacillating over the use of a vaccine against Japanese encephalitis despite the district having had severe outbreaks of the disease earlier and considered to a vulnerable area. Moreover, state health officials had failed to carry out basic mosquito control activities – even basic steps like distributing mosquito nets – for lack of manpower. Many of Malkangiri’s children are also severely malnourished and this might well have made them more susceptible to the Japanese encephalitis virus.

Healthcare comes floating once a month to these Assam islands

Assam has some of the worst health indicators in the country, falling well below national standards on infant and maternal mortality rates. More than three million people in Assam live in saporis, or riverine islands on the Brahmaputra, which ceaselessly shift due to river erosion and are connected to the large towns and cities on the banks by a few regular ferries and ramshackle country boats. On most saporis, there is no electricity, clean drinking water and schools.

But the area now has 15 boat clinics, which have provided basic health services to over 1.5 million people across 13 districts in Assam. The idea came from a journalist who heard of a pregnant woman dying on a sapori because she could not get to a medical facility after she missed a ferry. His solution was to have a boat clinics towould take doctors to saporis, instead of residents struggling to reach these services. The National Health Mission picked up the idea in 2008 and now boat clinics reach between 18,000 and 20,000 sapori residents every month.

Silicosis – the occupational disease that is wiping out families in Rajasthan

In the last four years, government medical boards have identified 5,307 workers as suffering from silicosis in Rajasthan. Health activists say that the toll from the disease is higher. According to doctors, those who work in mines and stone quarries inhale dust powder that deposits in their lungs, which leads to fibrosis that makes the lungs stiff. The victim’s breathing capacity reduces, till one day he or she cannot breathe at all.

Even though silicosis is among the list of occupational diseases recognised by the Employees Compensation law, the experience of mine workers in Rajasthan’s villages shows they have had to struggle to first get a diagnosis and then prove they suffer from an occupational disease.

A pattern of illness and death can be found in many villages in Ajmer, where entire families belonging to Dalit and backward castes migrate every year to work in sandstone mines across Bhilwara, Bundi and Kota districts.

A rare skeletal disorder is identified in Poonch

Residents of two villages in Poonch have silently suffered for decades as many among them have developed severe skeletal deformities. The disease, that some health officials told them was polio and others had no name for, left them with clawed hands, enlarged joints and folded legs and some so debilitated that they only had to be carried about by an able-bodied family member or neighbour.

A recent scientific study published in Nature’s journal Scientific Reports has shown that the disease is Progressive Pseudorheumatoid Dysplasia or PPD that occurs because of a rare genetic mutation caused by generations of marriage only within a highly consanguineous society. While PPD normally affects one person in a million people, it had affected 85 people within this cluster of Poonch villages with a population of about 6,400.

The disease has gone undetected for all these years due to the lack of basic infrastructure in the area. The main road can only be reached from the villages only after a steep climb and a footbridge across the stream. Parts of the road and the approach to the footbridge caved in after the floods in 2014. The nearest hospital is 5 kms away and there is no guarantee of a doctor being available at the facility, as Scroll.in reporter Rayan Naqash found in a visit to the region in December.

The fear of Kyasanur Forest Disease has kept Wayanad’s health officials on alert

Health and forest officials In Kerala’s Wayanad district have been on high alert since the beginning of November, anticipating another possible outbreak of Kyasanur Forest Disease.

The disease, named after the forest in Karnataka where it was first detected, is caused by the Kyasanur Forest Disease virus and spreads through the bite of ticks. Infected monkeys serve as blood meal for these ticks, which in turn bite humans. The disease results in fever, chills, headaches, sometimes bleeding and in 2% to 105 of cases is fatal.

Kyasanur Forest Disease hit Wayanad hard in 2015, infecting 102 people and killing 11. As forest officials recorded a sudden increase in tick populations this year – some think due to deforestation and higher temperatures overall – they are bracing for another possible outbreak of the disease.