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21 June, 2019 12:36:45 AM / LAST MODIFIED: 23 June, 2019 11:01:51 AM
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High treatment cost takes toll on poor patients

Thalassemia is an inherited blood disorder characterised by less hemoglobin and fewer red blood cells in body compared to normal level. It is estimated that about 7,000 to 14,000 children are born with the disorder in the country every year. Although the number is staggering, awareness of the disease is very poor. In a three-part series, The Independent looks into the present status of real-time statistics of thalassaemia patients, existing arrangements for treatment and cost, and experts’ opinion on how to prevent the disease. Today’s report is the second installment.
RAFIQUL ISLAM AZAD, Dhaka
High treatment cost takes toll on poor patients

The treatment of thalassaemia is so expensive that many die failing to meet the expenses. However, there is no data as to how many thalassaemia patients die every year without treatment, or due to their inability to continue treatment. On an average, a patient has to spend Tk 10,000 to Tk. 40,000 each month on safe blood transfusion, medicines and carrying out medical tests, said experts.

The experts said Allegenic Bone Marrow Transplant is a specialised treatment method and major solution for thalassaemia. But it is costly and it depends on matching of bone marrow tissue with the patient's brothers or sisters. But there is no Allegenic Bone Marrow Transplant facility in Bangladesh, they said.

Kari Belal, 50, hailing from the village of Polti of Senbagh in Noakhali, has become helpless providing treatment to his youngest daughter Sumaiya Akhter Bijli, a thalassaemia patient.

Belal, who went to Abu Dhabi with a dream to build a happy and prosperous family with his earnings, returned home two and a half years ago and lost all his valuables, including land, to provide treatment to Bijli, a class seven madrasa student, for about 11 years.

“I have to spend Tk. 10,000-12,000 each month on treatment. She has to be taken from the village home twice a month for blood transfusion and take other treatment,” he said.

Talking to this correspondent while getting down from the Thalassaemia Foundation Hospital at Chamelibagh, Belal said Bijli is treated in the hospital and blood tranfusion is done at the Bangabandhu Sheikh Mujib Medical University (BSMMU).

He called upon the Prime Minister to extend financial support to families that have lost everything for treatment of their near and dear ones and take measures to provide free treatment to the thalassaemia patients.

Thalassaemia syndromes are a heterogeneous group of single gene disorders, inherited in an autosomal recessive manner and it is one of the most challenging diseases being faced by mankind, with virtually no permanent cure. The medical and economic problems of thalassaemia are considered to be a vast public health problem.

Prof Dr Manzur Morshed, adviser of the Bangladesh Thalassaemia Foundation, said the treatment cost of thalassaemia patients depends on the age group. The cost for minors is less than that of adults, he said. “Indeed, the treatment cost for a child thalassaemia patient varies between Tk 10,000 and Tk 15,000 and for an adult it ranges from Tk 25,000 to Tk 40,000 each month,” he said. Dr Manzur Morshed said despite spending the huge amount of money, thalassaemia patients in the country do not get proper treatment, as  blood transfusion is often compromised considering the cost.

“Patients are being transfused with risky blood as they cannot afford the cost of necessary tests for the blood,” he said.

He said: “We transfuse blood just by matching the blood group and cross-matching. But it needs to be ensured that the blood is safe to avoid risk of other diseases.”

Referring to the background of creation of the Bangladesh Thalassaemia Foundation and Bangladesh Thalassaemia Samiti by generous victims’ families, he said the non-profit organisations know how to deal with the patients and are taking care of the most challenging diseases, but they have no funds.

On the other hand, he said the government has resources but they have no plan of action to deal with the thalassaemia patients.

The Thalassaemia Foundation adviser said the treatment by bone marrow transplant would be costlier and many patients won’t be able to avail of it.

He said it needs matching of bone marrow tissue of the patient with his/her brothers or sisters. He feels only 30 per cent of the patients may be able to avail of it. He, however, put emphasis on the need to make Allegenic Bone Marrow Transplant available in Bangladesh.

Prof Dr Md Selimuzzaman, head of the department of hematology and oncology of the Dhaka Shishu Hospital, said thalassaemia patients would have to be transfused with blood to survive, otherwise they would die.

He said thalassaemia patients normally survive for 20 to 25 years. However, it depends on treatment as to how they can afford the treatment costs.

Dr Md Selimuzzaman, who is also secretary general of the Thalassaemia Centre at the Dhaka Shishu Hospital, said they have a one-stop service with 20 free bed capacities.

He feels each government hospital, including the Dhaka Medical Hospital, should have a thalassaemia centre and one-stop service for them.

Dr Syed Masuma Rahman, vice-chairman of the Bangladesh Thalassaemia Foundation, said there is no data on how many thalassaemia patients die every year.

“Many of the thalassaemia patients come to us after cardiac failure. There is nothing we can do. Those who do not come to us, are actually untraceable,” she said.

Dr Abul Kalam Azad, director general of the Directorate of Health Services, at a recent function announced that the government would allocate Tk. 6 crore in the forthcoming budget to provide free medicines to thalassaemia patients.

“The money will be used to detect thalassaemia, provide medicines to thalassaemia patients free of cost through government hospitals,” he said.

According to a research paper, the estimated prevalence of thalassaemia is among 16 per cent people in Cyprus, 1 per cent in Thailand, and 3–8 per cent in Bangladesh, China, India, Malaysia and Pakistan.


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Editor : M. Shamsur Rahman

Published by the Editor on behalf of Independent Publications Limited at Media Printers, 446/H, Tejgaon I/A, Dhaka-1215.
Editorial, News & Commercial Offices : Beximco Media Complex, 149-150 Tejgaon I/A, Dhaka-1208, Bangladesh. GPO Box No. 934, Dhaka-1000.

Editor : M. Shamsur Rahman
Published by the Editor on behalf of Independent Publications Limited at Media Printers, 446/H, Tejgaon I/A, Dhaka-1215.
Editorial, News & Commercial Offices : Beximco Media Complex, 149-150 Tejgaon I/A, Dhaka-1208, Bangladesh. GPO Box No. 934, Dhaka-1000.

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