Hemophilia patient’s life hangs by thread

Hemophilia patient’s life hangs by thread
1. Longlong Konyak from Mon district has Hemophilia. He is seen here waiting for treatment at the Dimapur Civil Hospital.
2. Locked doors of the Pradhan Mantri Jan Arogya Yojana, Ayushman Bharat, office at Dimapur Civil Hospital. Konyak was unable to access his right to cashless treatment due to absence of Ayushman Bharat coordinators.
3. Posters of the insurance scheme can be seen all over the Dimapur Civil Hospital. Promising the poor and vulnerable cashless treatment up to Rs. 5 lakh per year, its implementation remains negligent in Nagaland State. (Morung Photos)


Ayushman Bharat remains missing from Dimapur Civil Hospital


Morung Express News
Dimapur | October 21


Cuts and wounds are often incidental to life. But T Longlong Konyak’s (22) life is incidental to a cut; a minor wound could determine his course of life. He suffers from Hemophilia, a disorder that slows the blood clotting process.


Acquired through heredity, one of his six siblings died of the disorder in 2005, at the age of 24. Longlong is now battling for life at the Dimapur Civil Hospital.


“He used to have rickety limbs and swollen joints as a child,” said Longlong’s father, Tongna Konyak (66), describing the painful symptoms of the disorder that affected three of his four sons and two daughters. “We tried quacks and doctors; everyone gave up,” his father explained, sitting by his sleeping ward at the Hospital’s OPD. The only way out was transfusion of blood or, more specifically, certain components of blood that assist clotting.


Farmers, Tongna and his wife, Sholong, fought for the lives of their bleeding children through daily wage work and high interest loans. Homed in Tanhai village of Mon district, the family often found itself on rugged roads to either Nagaland’s cities or Assam’s. Blood sometimes cost up to Rs. 3000 per unit in Dibrugarh; voluntary donors were hard to come by. But his parents did whatever it took to give a meaningful life to Longlong—he lived to start a family, a wife, a daughter, a son.


Three weeks back, Longlong began to bleed internally. “It was probably due to cutting firewood, which he is not supposed to do with his disability but he has to sustain a family,” said T Methna Konyak (36), Longlong’s eldest brother who took him to the Mon Civil Hospital.


The Mon Civil Hospital has a blood storage unit and helps organize voluntary donors. But blood components cannot be separated in the absence of a blood bank. “This means a lot more blood has to be transfused into the patient’s system which is neither safe nor preferable,” explained a doctor from the Hospital. Eight whole blood units were transfused into Longlong’s system. He contracted jaundice. Doctors gave up again.


“At such points, most families take patients back to their village to die a slow death, particularly due to financial constraints,” acknowledged Methna. But one factor pushed their family to take the step towards Dimapur for further treatment—a recently acquired ‘Ayushman Bharat’ card. On October 19, they took the daunting bus ride from Mon to Dimapur. “He was almost dead by the time we arrived,” narrated the brother.


PM Modi’s National Health Protection Scheme
Prime Minister Narendra Modi officially launched the Pradhan Mantri Jan Arogya Yojana, ‘Ayushman Bharat,’ a National Health Protection Mission for the poor and vulnerable, in September this year though it was piloted in April. With the promise of health insurance cover of up to Rs. 5 lakh a year, the scheme was launched as a pilot project in Dimapur on August 20 and throughout Nagaland in September.


Longlong Konyak’s family acquired an ‘Ayushman Bharat’ beneficiary card, also called a ‘golden card,’ for him recently from Mon hoping that the much celebrated scheme will help him live.


On arrival at the Dimapur Civil Hospital on October 19 though, the family found the ‘Ayushman Bharat’ office at the Hospital locked.


“We were in urgent need of blood. We asked nurses, doctors and called up the persons concerned but to no avail. The office remained locked with no one to assist us. Left with no option, we bought three units of White Blood Cells for Rs. 400 each, and four units of Red Blood Cells for Rs. 1600 each,” informed Methna.


The ‘Ayushman Bharat’ scheme is administered locally by an ‘Ayushman Mitra’ (coordination officer) who has a desk at every government hospital and empanelled private hospital. “Patients can access treatment only through an Ayushman Mitra who facilitates the procedure through the patient’s golden card,” elucidated an ‘Ayushman Mitra’ from Mon district. “They have to be at their desks at all times.”


This rule is being openly flouted at Dimapur Civil Hospital.


Longlong’s father, Tongna, searched for words. “We have never expected anything from the government. This is the first time we thought we may get some assistance but all we got was a closed door,” he said, while struggling to organize canteen food for his son as the Hospital does not even cater to a patient’s food needs.


Brother, Methna, was incensed. “Is this a health scheme or a political stunt for 2019 elections? Has the Government of Nagaland launched this scheme so patients could die waiting for cashless healthcare?”


T Thomas Konyak (22), a friend who came to donate blood to Longlong was similarly irate. “Medical facilities are so poor in Nagaland apart from in Dimapur and Kohima. Even here they are unable to provide us promised healthcare. For poor people like us there are no rights and benefits, only confusion and false promises.”


With both cash and blood running dry, Longlong’s life hangs by a thread; as Methna noted, “Just like so many Hemophilia patients who die in Nagaland without even knowing what they are suffering from. There are no help networks, awareness drives or state support to deal with the disorder.”