Thalassemia Treatment

Project Title

A study on  base line survey of Thalassemia carriers among unmarried University Students    and Garments Factory workers  at Savar, Bangladesh.

Background, Scope and Impact

Thalassemia is a blood disorder passed down through families (inherited) in which the body makes an abnormal form of hemoglobin. Hemoglobin is the protein in Red Blood Cells (RBC) that carries oxygen. The disorder results in large numbers of RBC being destroyed, which leads to anemia.

Thalassemia is a very common blood disorder in Bangladesh. It is caused by a genetic mutation that results in defective hemoglobin production. The disease manifests as severe anemia in early childhood, usually between 1-3 years of age. The typical symptoms are pallor, jaundice, frequent infections, poor appetite, irritability, poor growth, and abdominal distension.

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In Bangladesh there are 170 million population and about 15000 patient is new born yearly and  thousands  of  unreported patients exists. There are  4.1% to 18.0%  carriers of Hb-E and Beta Thalassaemia in the country, which varies in different areas. The actual statistics is not available, as neither  scientific study nor one stop service, nor any data base  is available in the country on thalassaemia major, minor, transfusion dependent etc. There is no ongoing Government program.  

The treatment of thalassemia is regular blood transfusion at 2-4 weeks intervals to correct the anemia. A safe and sustainable supply of blood is needed to cater the thalassemia patients.  Ideally, the patients need RBC (free of white blood cells). Alternatively, a bedside leuko- reduction filter is used to reduce the white cells from blood. In Bangladesh in most cases whole blood is transfused instead of RBC without screening for blood  transfusion- transmitted infection  as Hepatitis B and C. As a result patient die usually at the age of 15 to 30 years while due to modern treatment in developed country patient live as usual for more than 70 years of age.  A significant number of patients in our country contact blood  transfusion- transmitted infection  as Hepatitis B and C etc.

Chronic blood transfusion results in toxic iron accumulation in vital organs of the patient  as liver, heart and pancreas etc.  The iron overload gives rise to further complications such as heart failure, liver cirrhosis, diabetes and growth retardation. Consequently, the patients have to take iron reducing medications throughout their lives to mitigate the iron toxicity. The currently available medications are desferrioxamine, deferiprone, and deferasirox.

Thalassemia is a preventable disease. The disease only occurs when both the parents carry the thalassemia gene. In such families, the probability of having a thalassemia affected baby in each pregnancy is 25%. However, if either partner is healthy, children will not be affected at all.

So it is urgently needed for pre-marital checkup, genetic counseling  and thus the disease can be prevented through awareness creation. IACIB has started 10 bedded “Thalassemia Hospital and Institute” in its own land at Savar, in the existing Filaria and General Hospital building with a future plan for  vertical extension. This proposal is submitted to HBB for necessary support to conduct base line survey of Thalassemia carriers  among  unmarried University Students and  Garments Factory workers  at Savar, Bangladesh with few specific objectives listed.

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There is no  govt program from Ministry of Health for its prevention or scientific treatment facility. There is a need for premarital testing and genetic counseling. If one is found positive for carrier, he/ she should not get marry/ should not have  a positive spouse. When these unfortunate victims realize that both husband and wife has the same abnormal  haemoglobin producing gene and children is suffering from Thalassaemia, require frequent Red blood cell transfusion every weekly and iron chelating medication throughout the life, it is too late resulting in tragic horrifying deaths at early age. This awareness building and screening  program will produce scientifically well trained unmarried group of Thalassaemia  prevention and blood donor advocates. They will spread knowledge and strategies to other students, Garments workers and  general population to prevent Thalassaemia through premarital screening, genetic counseling, donating blood in Blood donation program for Thalassemia  patients, forming blood donor group and taking appropriate medical care for proper treatment etc. A computerized data base will be maintained for Thalassaemia carriers and blood donors for future record. The program will reflect positive impact on poverty reduction, environmental cleanliness  as well by prevention of new Thalassaemia cases, which is very valuable asset for the less fortunate segment of poor community of Bangladesh​

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Phases

1.  First month 

• Appointment of staff.

• Training structure formation

• Advocacy meeting  & TOT

• Development, Printing and  distribution of leaflet on Thalassaemia.

 2. Second and third month

• Advocacy meeting with target population

• Leaflet distribution on Thalassaemia for its prevention.

• Blood collection and testing.

3. Fourth month

• Blood testing, data analysis, report writing, audit  and submission of report.

Objective 

1. To conduct base line survey of Thalassemia carriers  among unmarried University Students and  Garments Factory workers in Savar upozila under Dhaka district.

2. Advocacy meeting among University students, Garments factory management and  garments workers  for its prevention.

3. To run campaigns to increase the awareness about thalassemia and premarital screening and counseling among unmarried University Students and  Garments Factory workers.

4. To reduce new thalassemia birth through thalassemia prevention program.

5. To encourage the target community to take part in Blood donation program for Thalassemia  patients.

6. To maintain a computerized data base  for Thalassaemia carriers and blood donors for future record.

How it aligns with HBB’s mission and vision

HBB’s mission is to alleviate suffering of the under privileged around the world using the power of education, technology and economic development. Humanity Beyond Barriers sees a future free of ignorance, poverty and disease. Therefore, this project is closely aligns with HBB’s mission.

Success Critera

The prevalence of Thalassemia carrier is  very high as a genetic abnormal haemoglobin producing RBC disorder in Bangladesh. The specific  objectives of this short term project are 1. To conduct base line survey of Thalassemia carriers  among unmarried University Students and  Garments Factory workers,     2. Advocacy meeting among University  students, Garments factory management and  garments workers  for its prevention, 3.To run campaigns to increase the awareness about thalassemia and premarital screening and counseling among unmarried University Students and  Garments Factory workers, 4. To reduce new thalassemia birth through thalassemia prevention program and 5. To encourage the target community to take part in Blood donation program for Thalassemia  patients.

After successful completion of the project it will increase the knowledge of the target community- Jahangirnagar University students, teachers, Garments factory workers  and management staff in Savar area. Prevalence  will be detected, positive students will be aware of the problem and will get marry accordingly to prevent thalassaemia in his/ her offspring. Other students, teachers, workers, management staff will test the blood willingly for their safety. They will be encouraged to donate  blood for sufferers. Thus through this project “Little Advocates” will be produced in the community, University and Garments factories etc. Thus the project will be sustainable gradually.

Project Cost

USD 9926

Project Duration

4 Months