Kathmandu, April 12

Neera Kumari Pandey, a mother of two sons — one diagnosed with haemophilia and other with meningitis — got emotional when she shared her daily experience. She has been struggling day in and day out for the medication of her ailing sons, to keep them alive.

“It has been 15 years that I haven’t slept well,” said teary-eyed Neera. A middle class woman living in Maharajgunj, she has been sustaining her family of four with a meagre income of her husband, who is an accountant in Tribhuvan University.

Her first child was diagnosed with haemophilia, an inherited bleeding disorder caused by deficiency of clotting factors in the blood, at the age of two. Once when her son Raju Pandey had a cut in his leg, the bleeding didn’t stop. “We went to Bir Hospital for treatment. There he was diagnosed with haemophilia.”

Haematologists said in this kind of bleeding disorder, mostly males are the sufferers and females are the carriers.

It occurs in one out of 5,000 male births. Most of the children, with haemophilia, after being injured, may have muscle or joint swelling due to internal bleeding. The swelling may result in severe pain.

“Since the treatment and the medication of the disorder are very expensive I have been stitching clothes every day to collect money so that my son can survive,” she said.

The treatment of haemophilia is extremely expensive as a patient has to undergo treatment and medication for the disease throughout his/her life.

According to doctors, the treatment is done by infusion of blood products like fresh frozen plasma, cryoprecipitate or anti-haemophiliac factor concentrates at the time of every bleeding episode.

“The average cost of treatment is usually Rs 520,000 per year,” said Dr Niraj Singh, haematologist at Bir Hospital. He said complications could cause expenses to exceed that amount.

“Blood banks operated by Nepal Red Cross Society are the only suppliers of fresh frozen plasma and cryoprecipitate in Nepal.

Till now, World Federation of Haemophilia has been supplying coagulation factors required for the patient. Nearly 700 patients with haemophilia are from factors supplied by WFH in Nepal, but it is estimated that there might be more than 4,000 people with haemophilia living in the country. According to World Health Organisation, there are nearly 3,500 people with haemophilia in Nepal.

People with the disorder have been demanding that the government make available coagulation factors free of cost. The government has recognised haemophilia in ‘Human Rights for Persons with Disabilities Act 2017.’ The act has the provision of providing free factor proteins for the patients.

“However, the government has not allocated any budget for this disorder,” said Mukunda Ghimire, general secretary of Nepal Haemophilia Society. During a press meet organised here today.