Kochi: Haemophilia not in Karunya plan

KOCHI: Mothers of children afflicted with haemophilia are a harried lot as the benefit of Karunya Benevolent Fund (KBF) is now getting limited to only hospitalisation.

Experts and mothers say Karunya support helped improve considerably the quality of life, reduced school absenteeism and boosted the locomotor functions among haemophilia children.

“The news of stopping the faclity offered by KBF to non-hospitalised hae-mophelia patients is shocking as it will hit the families of 1,500 patients’ families limping back to normal with free supply of expensive clotting factor concentrates. Sixty per cent of these families have children,” said Dr N. Vijayakumar, medical officer in charge, Haemophilia Treatment Centre, Aluva.

“Five years back 70 per cent of patients suffered from handicap by 17 years of age and the KBF support considerably improved the quality of life. Everything will go back to square one if the benefits are capped or taken away. Because of the improved health scenario, these children could pursue their studies and get admission to even medical colleges this year,” he added.

“Being a mother of a child with haemophilia is not an easy task. Since haemophilia is an incurable and expensive lifelong disease, the...

Kochi: ...child always brings in a financial crisis to manage its medication,” said Rohini T., Professor, Samaritan College of Nursing, Pazhanganad, near Aluva.

“The mother feels guilty when seeing the sufferings of her child, especially when aware that she is a carrier.

With a sobbing heart she turns tough on her child when he engages in outdoor games/plays. Taking the child repeatedly to a hospital or health centre for long periods of physiotherapy or rehabilitation is another difficulty. Thus the challenges faced by these mothers and children are not only health related and medical in nature, but emotional, psychosocial, financial and educational,” said Rohini.

“The missing clotting factor replacement therapy is the main treatment for managing haemophilia. To avoid associated complications like joint pain, intra-articular spontaneous bleeding, deep muscular bleeding and chronic pain and to live a normal daily life, the child or any other patient should be infused the exogenous anti-haemophilic factor (AHF) or clotting factor directly into the vein on regular basis, that is, prophylaxis treatment. However, due to high cost it has become impossible to arrange the AHF on regular basis. Many medical researchers acclaimed better quality of life in low dose prophylaxis treatment compared to on-demand treatment by retrospective analysis,” said Dr Vijayakumar.

“The clotting factor when made available free of cost by the Kerala government under KBF had pacified the pains and heartaches of many haemophilia patients, especially children. One dosage costs Rs 6,000 and in normal bleeds, a patient will need dosages worth Rs 36,000 to cure and in a recent very serious instance this had gone up to Rs 82 lakh for a patient in Amrita Institute of Medical Sciences which was totally covered by KBR. In ordinary cases we advice home therapy/outpatient treatment which is not covered under the new Karunya Scheme which is a serious concern,” said Dr Vijayakumar.