The New Nation - Internet Edition

Sardar Arif Uddin

Thalassaemia, one of the most common hereditary disorders characterised by absence or reduced amounts of haemoglobin, the oxygen-carrying protein inside the red blood cells is considered to be a global problem including Bangladesh. There are two basic groups of Thalassaemia disorders - Alpha Thalassaemia and Beta Thalassaemia. These conditions cause varying degrees of anaemia, which can range in significant degrees to life threatening. Thalassaemia is a major problem all over the world but particularly in the developing countries where the resources are limited. Several millions of the patients suffer from severe Thalassaemia diseases. Stem cell transplantation is currently the only curative therapy. Bone marrow transplantation offers a high probability of cure when performed on young children. As the patient becomes older there is a higher risk, especially the high incidence of graft rejection. Although there are some scopes to cure Thalassaemia but considering the economic condition of Bangladesh as a whole as well as poor people's livelihood position, only preventive initiative of Thalassaemia can be highly appreciated. We can address some diseases like Tuberculosis, Malaria, and Leprosy in both curative and preventive perspective. But we have to concentrate more on preventive arena only regarding some diseases like HIV, AIDS, Thalassaemia, Bird Flue etc. Since the exact Medicare system has yet not been identified, huge amount of money is needed to cure the above said diseases. In that sense, more investment to prevent these diseases will be more effective. In the case of Bangladesh, we have remarkable success story to prevent Leprosy in late 90s. To address Tuberculosis both public and private sectors are involved. NGOs under the Government initiative programme with global financial support system are playing a vital role in preventing HIV/AIDS, But Thalassaemia as a silent disease is still now ignored both in public and private priority agenda, although the 'disease of burden of Thalassaemia' rate is very high.

Basically Thalassaemia is distributed from Mediterranean across the Middle East through Southern Asia to South East Asia. However, recent migrations of people during the last decade have spread Thalassaemia genes throughout the world. Therefore Thalassaemia is at present considered to be a global health problem. The incidence of Thalassaemia carriers varies greatly from country to country throughout the world. It is very common in the Middle East, the Indian Sub-continent and throughout South East Asia, in a region including Southern China, Thailand, Malaysia and parts of the Southern Mediterranean. These regions coincide with areas where Malaria occurs. Thalassaemia trait is believed to offer some resistance to Malaria. Thalassaemia is common in those parts of the world where Malaria is endemic. Recent statistics said, in Thailand with the population of 60 million, there are 600,000 Thalassaemia affected individuals. According to US Census Bureau, International database (2004) the countries most exposed to the extrapolated prevalence of Thalassaemia, are USA (1079) and Canada (119) in North America; Germany (303), France (222) and UK (221) in Europe; China (4775), India (3915), Indonesia (876) and Pakistan (585) in Asia. On the other hand, Bangladesh is relatively less exposed to Thalassaemia compared to China, India and Pakistan. The alarming condition in Bangladesh is that there is no national database on Thalassaemia, although the national policy makers continuously speak of Thalassaemia issues at different workshops and seminars. Even Health Minister mentioned of some Thalassaemia patient related information without any nation survey based statistics.

According to different national daily newspapers, about 8000 children are born with Thalassaemia every year (UNB, September 08, 2000); 7% or 9 Million of the total population are Thalassaemia carriers and about 6000 children in Bangladesh are born with Thalassaemia each year (Daily Star, April 06, 2003). About 4.8 Million people or 4% of the total population of the country are now carrying the gene of the silent killer disease (BSS, May 27, 2004). There are 10 Million Thalassaemia patients in Bangladesh at present and about 2000 babies are being born with Thalassaemia every day in Bangladesh (Observer, May 22, 2003). Due to lack of National Thalassaemia Data Based, different source and persons quote differently. In 2003 Bangladesh Thalassaemia Samity (BTS) conducted a small-scale survey among 1000 college students in 6 divisions to know the Thalassaemia carrier status in Bangladesh. The findings of the survey showed that total Thalassaemia carrier (both E-trait and Beta Carrier) in Dhaka is 7.04%. It is 11.77% in Chittagong, 19.18% in Rajshahi, 15.27% in Khulna, 3.5% in Barisal and 8.33% in Sylhet. The total figure in Bangladesh is 9.43%, which definitely shows an alarming situation. So whatever the prevalence and incidence rate of Thalassaemia in Bangladesh, it is true that the treatment of Thalassaemia is very expensive and is not affordable to the common people. More then 90% of the Thalassaemia patients in Bangladesh cannot afford regular treatment or blood transfusion. There is no public facility to get treatment on Thalassaemia within the Ministry of Health; even there is no specific programme for building mass awareness regarding Thalassaemia prevention. Chances for children to being exposed to Thalassaemia is very high if both mother and father are the Thalassaemia carriers. But if only one of them is a Thalassaemia carrier, the rate of exposure is very low.

Action Aid Bangladesh conducted another study titled "Disease of Burden and Household Vulnerability: A Social look into the disease of Thalassaemia" where it was found that all family members are vulnerable due to Thalassaemia of a single member. The physical vulnerability is one perspective related to any disease that is called 'medicalisation of disease' but there are other vulnerabilities like economic vulnerability, Emotional vulnerability, Distance vulnerability etc.

The multiple vulnerability creates the cumulative effects on family. As Thalassaemia patients demand to receive external blood once a month and sometimes twice a month in some cases, it takes huge amount of money as cost of blood, different types of tests of blood, finally blood transfusion cost etc. In total one bag blood transfusion cost approximately 300-400 taka. The poor parents feel huge economic burden in collecting blood for a Thalassaemia patient twice a week. More than a hundred cases were found in the study that parents lost their savings and then sold their land, cow even their home for the sake of blood transfusion for their Thalassaemia exposed children. In addition to economic vulnerability, as they have to sourcing the blood, spend the whole day for successful blood transfusion etc twice a week, they loose their earning day.

Due to lack of Government concentration on Thalassaemia, there is no scope for blood transfusion at divisional and district level. Only Dhaka Shishu Hospital, Thalassaemia Foundation, Bangladesh Thalassaemia Samity and some other NGOs are working on Thalassaemia issue. So parents have to remain ready to spend for blood transfusion at any cost. They have to go here and there to get these facilities, have to sell their assets whatever they have, have to set priority to spend money and finally have to get prepared mentally to see their Thalassaemia exposed children's death at any time. Not only economic vulnerability, parents as well as other family members are more vulnerable in terms of emotion, psychology, distance etc. Thalassaemia is not only the medical issues, its an issue of 'Social Injustice', an issue of 'Right to Information" and one of "Duty Bearer's downward accountability' and finally it's an issue of existing social and cultural discourse.

Shaon and Mim, two children of Manik Mia and Sheoli Begum at Natore District were exposed to the silent disease of Thalassaemia. Father Manik is just a rickshaw puller and his family of four had been living very happily until the day when both of the children got sick. After examining their blood they were identified as having Thalassaemia. The expenses to carry both the children are too much for someone like Manik Mia. The mother Sheoli Begum started to do some sewing work but their combine income could not settle the wellbeing of the family as the expense is too big to cover. An uncertain future looms over Shaon and Mim. At the age of nineteen Nazma was married to rickshaw-puller Altaf Hossain with a dowry of 19,000 taka. Her father's family is still providing the expenses of Nazma as her husband does not have financial ability for Nazma's treatment. The two brothers of Nazma are charging the father as the expenses of the treatment are creating havoc for the family. Altaf's mother also behaves very badly with Nazma for the disease.

Thalassaemia as a word unknown not only to general people; even many medical graduates are not aware about it. The dominant trend is to address any kind of disease or health issues in medical perspective. The effect of any diseases is visualised and medical professionals can treat it very professionally but the root causes of diseases not always rooted within human body, there are correlation between diseases and social determinant factors. So to cure the disease with medicine is not always the correct way, we have to identify social root and treat it socially where social scientists can perform efficiently like Medical Anthropologist, Public Health Anthropologist etc. Thalassaemia as a disease, which can be prevented easily through mass awareness building as well as social and cultural concentration on it. At the same time Medical science should spend time and invest more to discover the treatment with affordable cost. But by this time, all the stakeholders of a society can prevent the Thalassaemia together with efforts including National Priority Program intention.

Just avoid marriage between male and female that are carrying gene of Thalassaemia through raising awareness among grassroots level people to prevent the disease. Even laws may be enacted making blood test obligatory before marriage to prevent Thalassaemia. Because there is no alternative to prevent

Thalassaemia and that is possible only through Government initiative like using public and private media for awareness raising initiative, ensure blood test report before marriage registration, spread out the blood test facilities at all public health service centres. Finally we have to think nationally that 'Prevention is easier and less costly than cure of any disease'.