Staring at Death

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A killer disease is silently engulfing large tracts of population in south Kashmir with serious socio-economic fall-outs. Aakash Hassan reports the affliction and the danger that looms ahead

(L) Gul Mohammad Haji’s entire family is infected with Hepatitis-C. Pic: Seerat Rather

In 2013, when Syed Lutfullah, a local faith healer from Kokernag area of Islamabad district, died on his return from Udhampur, everyone in the village was in mourning.

Syed was believed to have died of Jaundice at Sher-e-Kashmir Institute of Medical Sciences (SKIMS), Srinagar. The events that followed Syed’s death would leave everyone in shock.

A few days later, a team of doctors visited Syed’s village, Takiya Magam, and took blood samples on random basis. The results were revealing; a few members of Syed’s family were affected by a deadly disease—Hepatitis C. Syed too had died not of Jaundice but of the same killer disease which kills more people than HIV in the USA.

Alarmed by the results, the doctors suggested a mass screening of the entire population of Takiya Magam and its adjoining villages. In the first phase, as many as 300 people tested positive for Hepatitis-C out of 1000 put to the test.

Hepatitis C, considered to be more dangerous than AIDS, is an infectious disease that primarily affects the liver. Early on, the infection has no symptoms. Later on, it often leads to liver disease and occasionally cirrhosis. The disease is spread by blood-to-blood contact usually because of intravenous drug use, poorly sterilized medical equipment and transfusions. So far, there is no vaccine against hepatitis C. Chronic infection can, however, be cured with medication.  Hepatitis C is globally the leading reason for liver transplantation, though the virus usually recurs after transplantation.

An estimated 170 million people worldwide are infected with hepatitis C. As per reports, about 11 million new cases occurred in 2013 alone.

That was the year, when the epidemic levels of Hepatitis-C occurrence in Kokernag, became a front page headline story in newspapers across Kashmir.  The epidemic spread was attributed to unprofessional handling of syringes by local medics while taking blood samples. The local medics, however, blamed health department officials for ignoring the first few cases reported in early years.

Alarmed by the situation, the government sanctioned a Rs 7.5 crore proposal of the health department, in February 2014, for screening, treatment and control of Hepatitis-C in the area. Initially, around 200 people started receiving treatment at district hospital Islamabad. Three years down the line, Takiya Magam and its adjoining village are still haunted by the deadly disease.

Ghulam Nabi, 35, a labourer visits the district hospital regularly to collect his weekly course of medicines from district hospital Islamabad. He and his wife were diagnosed positive two years ago.

Father of a three-year-old girl child, Nabi says the disease has drained him both physically and economically.

“When I heard about Hepatitis-C, I instantly decided to register my family for the screening,” says the visibly pail and frail Nabi.

Even as the Government initiative included free of cost testing, the overwhelming number of the people led to more than a month long wait to get tested. “It was then that I decided to visit Srinagar with my wife for screening,” says Nabi. There, the screening  would cost him Rupees five thousand, which he didn’t have. “I just had three thousand rupees,” Nabi recollects.

Then, Nabi’s wife suggested that only he should get screened for now, and postpone her test till they are able to cobble up more resources.“We finally managed money by selling my wife’s gold bangles,” said Nabi.

Once the results came, both the husband and wife were tested positive. “We take at least six tablets daily since then,” informed Nabi.

Nabi and his wife now complain of drowsiness, pain in joints, and general weakness. “I cannot work anymore. I am managing my expenses by selling my belongings,” said Nabi. “Medicine is free but I have to travel 30 kms once a week to get it.”

Takiya Magam village is a sleepy hamlet surrounded by lush green forests and inhabited by around four thousand souls. The small village square looks quiet and desolate. Ask anyone about Hepatitis-C and the answer is same: yes I too am infected. “There is hardly any house left in this village which is not affected,” said Nabi.

According to a study by World Health Organization (WHO), “globally, an estimated 71 million people have chronic hepatitis-C infection.” The study reports that “approximately four lakh people die of hepatitis-C annually.”

One has to climb a slope to reach Gul Mohammad Haji’s house in Takiya Magam. Haji, 55, has a family of eight members. All four adults in the family are hepatitis-C infected. “We have not yet got our four kids screened, but I am sure they too are infected,” said Haji.

Sitting at the verandah of his single storey house, Haji looks morose and depressed. “Can you imagine my situation as every member in my family is a living corpse?”, he asks.

Takiya Magam village in southern Kashmir’s Islamabad district.

Aged between 3 and 14, Haji wants to get his two kids screened but doesn’t have the money for the tests which cost around ten thousand rupees.

There are a number of diagnostic tests for hepatitis C, including HCV antibody enzyme immunoassay or ELISA, recombinant immunoblot assay, and quantitative HCV RNA polymerase chain reaction (PCR). Chronic hepatitis C is defined as infection with the hepatitis C virus persisting for more than six months. Testing is not able to distinguish between acute and chronic infections. Hepatitis C testing typically begins with blood testing to detect the presence of antibodies to the HCV, using an enzyme immunoassay. If this test is positive, a confirmatory test is then performed to verify the immunoassay and to determine the viral load.

Since 2013, when the first case was detected in Takiya Magam, Habibulla Mir, 60, the village headman, is working hard to help his fellow citizens. “Both me and my wife are infected,” he says matter-of-factly.

Mir has kept rough records of the happenings in the village from the day doctors first visited the area. He even recalls the names of the visiting doctors from SKIMS and AIIMS. In a display of typical rural innocence he says, “We were hopeful initially that we would get treatment as they would all speak in English.”

However, Haji rues that once the matter went off the media radar nobody visited them.

As per the records at the district hospital Islamabad, out of 2,468 people screened in the twin villages of Takiya Magam and Sonabrarie, 1115 people are infected. Besides, 75 cases were found positive in nearby Sagam village.

The data reveals that treatment of 207 patients has been completed so far while 548 people are under treatment. It also states that 229 patients need tertiary treatment.

Interestingly, the data claims that no death has occurred in these cases since the outbreak. Mir however contradicts this. “They are just running away from facts. They want us to die like this,” said Mir.

In 2013, before doctors could confirm outbreak of Hepatitis-C, at least ten deaths were wrongly attributed to jaundice.

“Since Hepatitis C was detected, at least 30 people have died in the village,” claims Mir.

When Bashir Ahmad Bhat, who was in his early forties, died recently, it once again sent chills among the infected. “He was victim number 30,” says Mir.

For the terrified villagers, the epidemic has economic and social fallouts as well.  Firdousa Banu, and her neighbor,  Naseema are reeling under consequent tragedies caused by the disease.

Two years ago, Firdousa, a mother of three boys, was diagnosed with Hepatitis-C, along with her two sons. “My younger son wasn’t  screened so we don’t know about him,” said Firdousa. “Rest we all are infected.”

Her husband died because of the disease despite taking medicine, claims Firdousa. “He was a labourer and wouldn’t take the medicine regularly.” she laments.

The family of Bashir Ahmad Bhat, who became victim No 30.

As her husband’s condition deteriorated, her elder son left his studies mid-way and started working as a labourer. “He wanted to earn enough to save his father, but he couldn’t,” she says.

Naseema, a mother of five children said, “Nobody from my family went for screening.” On being asked why, she had a stolid reply, “ My husband is a labourer who earns just three hundred rupees a day. We could not simply afford screening of such a big family.  “We have left it on Allah and let us see what he does,” said Naseema with a hint of resignation in her voice.

Sadly, Naseema’s family is not an isolated case. The elderly among the population; those above sixty have voluntarily decided not to get themselves screened because of economic reasons.

The social fallout of the disease is scarier. Raheem, 45, who worked as a domestic help in Srinagar was asked to leave after his employer learned that he was from Takiya Magam.

“We are treated like untouchables when we visit the hospital,” said Sabzar Ahmad, a local. “Even for a minor toothache we have to visit Srinagar because doctors here refuse to treat us.”

After the outbreak was reported, the resident of Takiya Magam faced isolation from adjoining areas. “Nobody now hires us for labour like they used to earlier,” said Mir.

Younis, who is in his late 20s, was supposed to get engaged to his childhood love in May 2013. “When the tests showed me Hepatitis C positive, the girl’s parents broke the engagement.” said Younis. Three years on, Younis is unable to find a bride for himself, despite being infection free now. “I am planning to marry a non local now,” he says with dejection.

The epidemic has taken a toll on the children’s education as well. A local said that no teacher wants to be posted in the village high school. Those who come are uncomfortable in teaching the kids. “These children are depressed and disinterested in studies,” says Tariq Ahmad, an English teacher who has preferred to stay put.

Tariq remembers how an exceptionally talented student dropped out after his father and uncle died of the disease within a short span. “Almost everyone in his family is infected. How can this little child concentrate?”, asks Tariq

While the killing of popular militant commander Burhan Wani put the neighbouring  Bamdoora in media focus, the Takiya Magam village was facing a crisis of a different kind.

While the whole valley including the Kokernag area was up in arms and clashes between government forces and protestors were rampant, an ambulance would quietly enter Magam every morning.

Habibullah Mir shows daily course of medicines he has to take.

“It would ferry patients to the hospital for the routine weekly checkup,” says Habibulla Mir, a local who accompanied the patients every single day for those tumultuous six months.

“I would accompany patients inside the overcrowded ambulance and return in the dead of the night,” says Mir showing a certificate of appreciation given by Chief Medical Officer, Islamabad. “I missed my lunch for six months straight,” he adds.

The doctors are quite wary of the situation and warn that if not checked in time, the infection will spread quickly, especially in the southern parts of Kashmir.  In March 2016, Government Medical College (GMC) Srinagar, released a report pointing out that four districts in southern Kashmir are already affected by Hepatitis-C. The highest prevalence is found in Islamabad (3.8 percent), followed by Shopian (1.3 percent), Kulgam (1.2 percent), and Pulwama (0.7 percent).

“The situation is alarming in these districts,” said a senior doctor, “If we don’t act fast it will turn into a major crisis.”

When Kashmir Life contacted the health department officials for their opinion, they urged this reporter to apprise the concerned minister about the crisis. At the same time the doctors vehemently contested the findings of a study conducted by SKIMS Medical college. “I think it is much higher than what their data tells, especially in the Kokernag area,” he said adding, “What has come out so far is just a tip of the iceberg.”

 

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