Too few, too costly treatment facilities for 2cr people with haematic disorders

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Abul Khair has lost two sons to haemophilia. His first son died at the age of six and the second when he was a first-year student at the Notre Dame College. His 10-year-old youngest son, Abdullah Al Raj, is also fighting a congenital haematological disorder.
Abdullah has been under treatment at the Haemophilia Society of Bangladesh since he was six-month old. ‘I am a student of Class VI. I do not have any friend. No one wants to make friendship with me. I can not run. I had not been able to walk for a long time. As I am born with haemophilia, once I could not even move alone,’ said the boy in a slow, despairing voice.
Kazi Golam Mahbub, father of another haemophilia patient, six-year-old Kazi Ismam, told New Age on Tuesday, ‘Such patients need round-the-clock watch and care and expensive treatment.’
The number of haemophilia patients in the country is estimated at 14,000, of whom only 353 have been diagnosed so far, according to the records of the society.
The treatment of the disease is too expensive for most of the patients. The annual average treatment cost per patient is more than Tk 90,000, said haematology experts.
Haemophilia is a disease people are usually born with. About 70 per cent of them inherit it, meaning the disease is passed on to them through their parents’ genes. The remaining 30 per cent patients develop the disease on their own, experts said.
According to them, ‘When the father has haemophilia and the mother does not none of their sons will have haemophilia but all the daughters will carry the gene.
Women having haemophilia genes are called carriers and there is a 50 per cent chance that any son of her will have the disease and a 50 per cent chance that any of her daughters will carry the gene.’
The experts emphasised introducing full-fledged haemophilia care centres
at the public hospitals to provide better treatment to haemophiliacs and withdrawing tariff on anti-haemophilic factor injections to bring the treatment cost down to an affordable level.
Because of poor diagnostic facilities, more than 90 per cent haemophiliacs are never diagnosed and die without treatment, while a majority of those who are diagnosed fail to get proper treatment as the cost is very high, according to sources at the Haemophilia Society of Bangladesh.
About two crore people in the country are suffering from haematic disorders. Although 20 to 30 per cent of them suffer from haematological diseases, there is no specialised government hospital or centre for them, said experts of haematology and cancer diseases.
A 15-bed haematology ward was set up and the haematology department was opened at Dhaka Medical College and Hospital in October 2004.
‘We provide outdoor and day-care services for patients suffering from various haematic disorders including all kinds of blood cancer, thalassaemia, bleeding disorder, lymphoma, haemophilia, and aplastic and other kinds of anaemia,’ said Professor Mohiuddin Ahmed Khan, head of the department and an HSB leader.
The departments of paediatrics, general medicine, urology, nephrology, neurology, ENT, and ophthalmology refer
many patients on a regular basis to the haematology department, which however fails to provide proper services because of shortage of instrument and medication, he added.
Mohiuddin submitted a proposal to the government for modernisation of the department and requested the hospital authorities to set up a laboratory with automatic blood cell counter, microscope, cell separator machine, and bone marrow transplantation machine. He also asked for sufficient supply of drugs.
But the department is yet to see any positive response to those appeals, the professor said.
There is a 15-bed ward at the DMCH and a 16-bed one at Bangabandhu Shaikh Mujib Medical University and a few beds at the National Institute of Cancer Hospital and Research at Mohakhali for haemophiliacs, said the HSB president, Professor MA Rashid.
In fact, the limited treatment facilities available for haemophiliacs in the country exist only in Dhaka city, he added.

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