Current Situation in Control Strategies and Health Systems in Asia - Indonesia

7/29/2019 Current Situation in Control Strategies and Health Systems in Asia - Indonesia

1/19

ust a ma a a yatThalassaemiaCentre

DepartmentofChildHealth

CiptoMangunkusumoHospitalJakarta,Indonesia


2/19

IndonesianArchipelagoIndonesianArchipelagoIndonesianArchipelagoIndonesianArchipelago

13. 70 s an s13. 70 s an s 2millionss uarekm2millionss uarekm 13. 70 s an s13. 70 s an s 2millionss uarekm2millionss uarekm 224millionspopulations224millionspopulations

224millionspopulations224millionspopulations

BirthrateBirthrate 2020

BirthrateBirthrate 2020


3/19

Thedistributionandfrequency(%)ofthalassemia carriersinIndonesia


4/19

Indonesia:

Healthbudget:


5/19

CarrierfrequencyofOGD-Thalassemia inIndonesianPopulation

0.

KaroO.15

TBS KajangMandar0.3 Java

0.3 O.2

0.3

0.6Toraja0.650.6

0.1 0.7

0.1Sumba

3.7kb

4.2kb 12.893.7

ItaNainggolan,EijkmanInstitute,2003


6/19

S ectrumof Thalassemia mutations&hemo lobino athies

ACEH

BATAK SOUTHCELEBES

inIndonesia

HbD LosAngeles

PolyA(Blacks)

IVS1nt5

HbLepore

PADANG

FilipinodeletionPolyA(Malay)

InitiationCodon

IVS1nt5Codon35

Codon4142

Codon17HbS

PolyA

IVS1nt5

HbMalay

SUNDANESE

IVS1nt5

JAVANESE

HbE Codon 30

BETAWI

IVS1nt5

Codon26Codon4142

IVS1nt1HbECodon15

IVS1nt5 Codon 4142

IVS1nt1 IVS2nt654Codon 35 IVS1nt2

IVS1nt1

Codon17

IVS1nt1HbS

25bpdeletion o on17 o on 9

Codon 26 HbG MakassarHbG Sirriraj


7/19

Distributionof thalassemiamutationsinpopulation

Typeofmutations

Mutationdistribution(%)

Po ulation Patient

MILDMUTATION

HbE 60 41

HbMalay 16 8.7

HbD LosAngeles 1.8 0

. .

PolyA (Black) 0.9 0

SEVEREMUTATION

IVS1nt5 3.6 26

IVS1nt1 0 1.7

. .

Cd 35 0 10

Cd 41/42 0.9 0.9

Filipinodeletion 2.7 3

HbLepore 0.9 6EijkmanInstitute


8/19

DistributionofSAOinIndonesia

Kimuraetal(1998),Yuwono(2002),Kimuraetal(2003),Syafruddin(2006),Syafruddin(2007),Megawati(2008)


9/19

Estimationofaffectedpopulation

There will be 2,500 affected children will born/year nt cto er 2011, 5,000 pat ents reg stere pat ents n a over n ones a The number of patients were quite large but far below the real number in

population because: Mild mutations asymptomatic under diagnosed

Undetected patients by health workers lack of knowledge


10/19

Increasednumberofnewpatientseveryyear

ro ems

agnos s: m e num ero es a s e a ora ory Establishedlabonlyin6bigcities:Jakarta,Bandung,Semarang,

Surabaya,Yogyakarta,Makasar Treatment:

Highcost:USD20.00030.000/patient/year

Inade uate uantit and ualit ofblood

NATscreeningnotwidelyused Highincidencerate(33.3%)ofhepatitisB/Cvirusinfection,HIVin2patients

Serumferritin andtransferrin saturationevery36months

Cardiacironoverload:Echo(Governmenthospital),T2*MRIavailableonlyin1pr va e osp a ,pr cequ eexpens ve 230

Underdoseofironchelations:Uncontrolledcomplications Limitednumberofpediatrichematologist

Notransplantationprogramyet


11/19

um er o new pa en s nThalassaemia Cent re Jakar ta(1994- Sept ember 2011)

s r u onaccording t o age

(N= 1,569)

Meanage14yearsold

Range:9months 43yearsold


12/19

Preventionprograms

Prevention program

on thalassemia screening protocol and prevention program in 2009

Pilot project in 10 big cities in Indonesia with high gene frequency

oa : re uce e num er o e a a assem a ma or an e athalassemia/HbE patients

Methods: n ena a screen ng an am y screen ng o e a assem a

patients and by coincidence

Red blood cell indices ana ys s PND


13/19

Preventionprogram

Other activities:

Professionals:workshop to GP and pediatrician outside Jakarta

Indonesian ObstetricGynecology Associations (POGI):Screenin the re nant women and hi h risk cou le PND

Obstetricians in Jakarta and some provinces have started toroutinely screened for thalassemia during ANC. Ei kman Institute: Genetic counselin DNA anal sis

Indonesian Thalassemia foundation with NGO (Rotary) Mass screening at the thalassemia center for students, office

, .

Medical students organization (Center of MedicalStudents Association/CIMSA) with 17 medical faculty from all

.


14/19

Prevent onprogram

ncrease t a assem a awarness to: Students especially Medical students

Included thalassemia in the curriculum for medical students

Seminar and free / low prices to thalassemia screening 4.76%carrier beta and HbE

Public / Layman:

First ladyThalassemia icon Mass media (TV, newspaper, radio, magazines); Thalassemia foundation: Thalassaemia bulletin start in March 2010,

ublish ever 3 months distributed to 23 POPTI branch, hos itals,and layman.

Make social events: fund rising, fun bike


15/19

Financialsupport

Government: Most of atients covered b

government insurance namelyGakin, Jamkesmas, Jamkesda,

SKTM, As es PNS October 2011: Jampelthas:

covers a pa en s w c noincluded in any insurance

transfusion and iron chelation

therapy), without monitoring USD


16/19

Management

September 2011: Thalassemia Diagnosis & Management

Association

Available since 2007 (DFP caplet)

DFP oral solution (2011)


17/19

Management

Priceofblood: USD30/bag,leucodepleted(ELISA)

NATscreeningnotwidelyused plusUSD50/bag


18/19

Prenata D agnos s :

17% couples whom detected as thalassemia carriers during

routine ANC

67 % history of thalassemia major in the family

Results:

Compound heterozygotes or homozygote: 20 % all (except 1) affected fetus were terminated

Two PNDs were misdiagnosed. Both were thalassemia

compound heterozygotes but were prenatally diagnosed ase erozygo es.

Problem: Government Act: Abortion ONLY 6 weeks of gestation


19/19

Summary

Thalassemia prevention program in Indonesia has been done,

2009

,

funding for diagnostic and treatment and pilot project forrevention ro ram

There are many obstacles to bring this issue as a national

ro ram such as demo ra hic ethnicit and diversit ofmutations and phenotypes

Documents

Current Situation in Control Strategies and Health Systems in Asia - Indonesia