Overview of the National Thalassaemia Programme in the Maldives by Dr Farzana Khatoon, National Thalassaemia Centre, Maldives

1. OVER VIEW OF NATIONAL
THALASSAEMIA PROGRAME IN
MALDIVES.
Dr Farzana Khatoon

2. OVERVIEW OF THALASSAEMIA
PROGRAM IN MALDIVES
• Thalassaemia is a huge Public Health concern
in Maldives.
• Total population of Maldives is around
330,000.
330 000
• Total number of Islands in Maldives: 1192.
• Number of Inhabited Islands: 200.
• N b of U i h bit d Islands: 992.
Numbr f Uninhabited I l d 992

3. • Beta Thalassaemia Carrier rate in Maldives is
about 18% to 20%. Statistics from: Society for
Health Education (SHE).
H lth Ed ti (SHE)
• Total number of thalassaemia patients
registered in Maldives till April 2011 – 726
p
patients.
• N b of patients taking treatment regularly
Number f ti t t ki t t t l l
at National Thalassaemia Centre: 292.
• Number of patients taking treatment at
different Islands: 253.

4. • Under the National Thalassaemia Program
Program,
National Thalassaemia Centre was established in
MALE’ on 29th December 1994
• It is a Day Care Centre.
• Working hours – 08:00 - 20:00 HRS
HRS.
• No.Of Patient registered at National
Thalassaemia Centre at the time of
establishment: 194.
Till April 2011 ---------- 726 Patients

5. National Thalassaemia program
have two components
A) Curative
B) Preventive

6. CURATIVE PROGRAME
Curative treatment consist of:
1) Conservative Treatment
2) Permanent – Bone Marrow Transplant
(BMT)

7. CONSERVATIVE TREATMENT
1) Blood transfusion
2) I
) Iron chelation
h l

8. BLOOD TRANSFUSION
Blood transfusion service is provided at
a) National Thalassaemia Centre - Male’
b) Indira Gandi Memorial Hospital - Male’
c) 6 Regional Hospitals
d) 69 Atoll Hospitals and Health Centres.

9. IRON CHELATION
Drugs used for iron chelation are :
• Injection Desferral
• Capsule Defereprone/Kelfer (Strengths:
500mg & 250mg)
• Tablet Deferasirox/Asunra (Strengths 400mg
& 100 )
100mg)

10. PERMANENT TREATMENT
Bone Marrow Transplant
So far 32 patients had BMT
No.of Patients and BMT Centers
N f P ti t d BMT C t Successful R j ti
S f l Rejection Death
D th
BMT
2 Bangkok (first in 1992) (second 1996)
g ( )( ) 2 ‐ ‐
16 CMC Vellore (India) (1997 – 2009) 8 ‐ 8
10 PESARO (Italy 2006)
( y ) 7 1 2
4 PESCARA (Italy 2009 ‐ 2010) 4 ‐ ‐
At present
1 patient undergoing transplant at PESCARA ( Italy )
ndergoing Ital
3 undergoing transplant at CMC Vellore ( India )

11. PREVENTIVE PROGRAMME
1.
1 Population screening for
Thalassaemia.
• Done at National Thalassaemia Centre –
g
free of charge.
• Done at Society for Health Education
(NGO) – Need to pay
pay.
• Thalassaemia screening facilities are not
available in any other Islands apart from
il bl i th I l d tf
Capital, Male’.

12. 2. Genetic Councelling.
• Done by trained councellors at National
Thalassaemia Centre and Society for Health
Education.
3. Creating awareness by Mass Media.
• Di t ib ti l fl t i E li h and L l
Distributing leaflets in English d Local
Language.
• Conducting workshops at different Islands once
or twice every year.
• Radio programs .
• TV spots.

13. 4. Advice for Prenatal Diagnosis.
• Prenatal facilities are not available in
Maldives yet Couple has to travel abroad
yet.
for this service.
5.Thalassaemia screening is mandatory for
marriage registration in Capital, Male’.
i i i i C i l M l ’
• Si
Since Thalassaemia screening f iliti are not
Th l i i facilities t
available in Islands, Thalassaemia screening is
not mandatory for marriage registrations in
Islands.

14. All Services provided at
National Thalassaemia
Centre
are free of charge.

15. NUMBER OF THALASAEMIA SCREENIGS DONE AT NTC

16. THALASSAEMIA STATISTICS
• No of registered patients at NTC till April 2011 -726
• Total no.of patients receiving treatment - 537
• Total no.of deaths till April 2011 - 157
no of
• After registration did not report to NTC - 32

17. Total no.of patient registered till
April 2011
Diagnosis No. of Patients
Beta Thalassaemia Major
j 622
Thalassaemia Intermedia 7
HbE / Beta Thalassaemia 82
HbH Disease 9
Sickle / Beta Thalassaemia 2
Sickle cell Disease 3
Hb S /D
S /D 1

18. TOTAL NO.OF BLOOD TRANSFUSION GIVEN
YEARLY AT NTC
•A
Average daily transfusion at NTC 20 to 25 patients
d il t f i t NTC 20 t 25 ti t
• Till April 2011, NO Thalassaemia patient is positive for any TTI Marker

19. TOTAL NO.OF DEATHS
NO OF