Kerala: Haemophilia patients at the receiving end of government apathy

KOCHI: With the state government all set to wind up Karunya Benevolent Fund (KBF) scheme, hundreds of haemophilia patients are facing hardships. Supply of clotting factor concentrates (CFCs) or factor VIII and IX, the agents in blood which helps its clotting, has been done through the financial support from KBF.


Though the patients who have already registered with KBF will get factor VIII and IX until March 31, 2020, the new patients who are yet to register with KBF are facing problems. New patients, mostly children below five years, are at the receiving end. Those who have already registered with the scheme also are at a loss as to what to do after March 31 when government will be winding up the scheme.

“Following the Union government announcing Ayushman Bharat scheme, the state government had to contribute to the scheme. Then, the state government decided to wind up KBF and divert the funds to the new scheme. But haemophilia has not been included in the list of diseases and patients who are eligible for financial support under the new scheme,” sources with health department said.

Later, the health department gave instructions to the authorities concerned to continue the free supply of factor VIII and IX to already registered patients from KBF until March 31, 2020. “At least 20 children below the age of five have come up seeking treatment. They are new patients and haven’t registered with Karunya scheme as government has stopped accepting applications for registration. Now, those children and their parents are having a tough time,’ said Dr N Vijayakumar, medical officer-in-charge, Haemophilia Treatment Centre attached to District Hospital, Aluva. “If factor is not available immediately, many cases of bleeding like cerebral bleed can cause casualty,” he said.

According to the health department authorities, government will be introducing new scheme for haemophilia patients next financial year. “The government is exploring the possibilities of introducing a new scheme for haemophilia patients from the next fiscal. As of now, we haven’t prepared one,” said Rajan Khobragade, health secretary. But the authorities have no answer on what the patients will do until then.

Akhil, a driver from Idukki, had come to HTC Aluva with his twins aged just six months. “It was a couple of months ago that my kids were diagnosed with haemophilia. I am finding it difficult to make both ends meet,” Akhil said. “I am the only earning member in my family. After a brief treatment at HTC Aluva, we have returned home now. The doctors have advised us to ensure that kids don’t fall or hit by any solid things. If it bleeds, there is no medicine available at the HTC. We are living under constant fear,” Akhil said. Pratheesh P Soman and Sameer Roshan, fathers of children suffering from the disease also have the same story to tell.

At the HTC, Aluva where around 50 per cent of total haemophilia patients in the state are registered provides treatment more than 900 patients. On an average, it would require around Rs 30 crore for providing factor VIII or IX to these patients.