Haemophilia-affected children left in the lurch

Six-month-old twins Kaushik and Kausal from Adimaly require blood factors for their growth and development. It is a lifelong requirement for the infants diagnosed with haemophilia a fortnight ago. The parents have already spent over ₹3 lakh in diagnostic and treatment procedures.

The twins’ father Akhil P., a taxi driver, is desperate for help. Help poured in from various quarters following a Facebook post on the condition of the twins.

“It is not just for my children that I decided to go public, but for several others too who are suffering in silence,” said Mr. Akhil.

There are three more such children below two years who had reached the only comprehensive Haemophilia Treatment Centre (HTC) in the State at Aluva, besides seven other children aged above two years to get government support since July 1 this year. But, the State government has no scheme for them as of now.

Haemophilia patients have been left in the lurch as the limitless support they used to get from the State government had ceased.

No new haemophilia patient is now registered at HTC for there is no fund to see through their treatment.

The government had supported all the requirements of blood factors for haemophiliacs from 2015 as it realised that a limit to the support would be detrimental to their treatment, especially children.

For the twins from Adimaly, a recommendation from the HTC has opened the doors of the Social Security Mission that has promised to provide funds for three months. However, Dr. Vijayakumar is worried about the fate of other children.

Karunya fund

The Karunya Benevolent Fund has provided for the blood factors required for haemophilia treatment, and all patients could access it from the nearest taluk hospital free of cost, said N. Vijayakumar, in-charge of HTC.

Blood factors are required as per the body weight of the patient. On an average, 10-20 units per kg per dose is required every 12 hours for 2-3 days for a minor bleed. Hence a person who weighs 50 kg would require 500 units, and the cost of one unit in the open market is ₹15. With Karunya fund getting merged with the Ayushman Bharat insurance that provides ₹5 lakh coverage and the State promoting it as Karunya Aarogya Suraksha Paddhati, no decision had been taken towards an alternative arrangement for the haemophilia patients. Nor were they covered in the new scheme and neither would a limit of ₹5 lakh suffice for their needs, said Dr. Vijayakumar.