 Bangladesh Thalassemia Foundation participates in the 10th International Conference on Thalassaemia & Haemoglobinopathies and 12th International TIF Conference for Thalassaemia Patients and Parents held on 7-10 January 2006 at Dubai. Total 10 person from Bangladesh participated the conference. There was a meeting with TIF board regarding the thalassemia situation in the country.
The summary of the meeting sent from TIF given below. Meeting with the Bangladesh Delegation Group
Monday 9 th January 2006, 10.30hrs
Dubai – U.A.E.
Participants:
Mohammad Didarul Islam, Mohammed Sharia Noor and Mohammad Fahim Forkan (brothers)
Dr. Abdur Rahim Robin of Bangladesh Thalassaemia Foundation with his brother and sister (both patients).
Md. Saiful Hussain of Bangladesh Thalassaemia Parents
Mr. Matin and family (parent) Mr Panos Englezos – TIF Chairman
Mrs Shobha Tuli – TIF President
Mr Bob Ficarra – TIF Board Member
Observer - Dr Chandra/India
Chairing the Meeting:
Mr Panos Englezos – TIF Chairman
____________________________________________ Disscussion : Mr Hussain and Dr Rahim Robin explained the status regarding Thalassaemia in Bangladesh, a country with an approximate population of 150 million. - There is an estimated number of 40,000 Thalassaemia patients, though the exact statistics are difficult to define, especially whether Thalassaemia Major or/ Intermedia.
- A National Registry of Patients does not exist.
- There is no support and a lack of priority for addressing Thalassaemia by the Government
- The Bangladesh Thalassaemia Society is a member of TIF. The Chairman of this Society had a thalassaemic son, who died of iron overload complications.
- The NTAs in Bangladesh are inactive – there is no support for patients in any area, whether providing information, education, treatment, etc.
- There is a lack of DFO (which is smuggled in illegally) and other chelators, filters, etc.
- The supply of Kelfer comes from India
- Pumps cost USD 400 – 500 in Bangladesh
- General feeling of mistrust in doctors.
Dr Chandra added that
- Many patients from Bangladesh visited her in India. They lacked knowledge of Thalassaemia and its treatment.
- Pumps should be purchased in India as they were significantly cheaper
- There is an urgent need to train doctors in Bangladesh
Mr Ficarra expressed that: - For parents to become more active in support of patients – fundraising, lobbying the MOH for treatment for their patients.
- The Thalassaemia Associations become more active and effective, by getting together and forming a Federation
- TIF could arrange a Delegation Visit, send educational material (books, videos) for health professionals and patients/parents, and also organize training sessions.
Mr Englezos requested that the Group submits the following information as soon as possible - ie by 25-02-2006: - Names, addresses, contact details and contact persons of all the National Thalassaemia Associations.
- The names, addresses and contact details of the Medical/Transfusion Centres and the names and contact details of the treating doctors.
- The details of the Ministry of Health in Bangladesh, for TIF to contact.
Mr Englezos further added that:
- The NTAs, patients and parents should all get together to form a Federation – a strong, combined voice, if improvements are to be achieved.
- Depending on the response from Bangladesh, TIF’s Board will then decide when to proceed with a Delegation Visit.
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