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


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Current Situation of Thalassemia Control Strategies in Indonesia by Pustika Amalia Wahidiyat, Thalassaemia Centre, Department of Child Health Cipto Mangunkusumo Hospital, Jakarta, Indonesia

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

  1. 1. Pustika Amalia Wahidiyat P ik  A li  W hidi Thalassaemia Centre Department of Child Health pCipto Mangunkusumo Hospital Jakarta, Indonesia
  2. 2. Indonesian Archipelago 13.670 islands 6  i l d 2 millions square km q 224 millions populations ± 200 ethnics groups Birth rate ± 20‰ Birth rate ±
  3. 3. The distribution and frequency (%) of β‐thalassemia carriers            in Indonesia
  4. 4.  Indonesia:   Health budget:  < 2%  Budget  Revenues and Expenditures  Income per capita (2010): USD 2,970 / person  (IMF)  Government insurance: NOT all, but for  government  employed only   Unemployment : 8,12 million people  Government special insurance for poor people: Gakin,  Jamkesmas, Jamkesda  (limited budget) Mostly low social economic status, uneducated
  5. 5. Carrier frequency of OGD α-Thalassemia in Indonesian PopulationKaroO.15 30.3 Mandar Kajang TBSS Malay Makasarese 0.3 Java 0.6 0.65 Toraja 0.6 0.3 0.1 0.7 O.2 Sumba  0.3 0.1 (Kodi+Waingapu) 3.7 kb 4.2 kb 12.89 3.7 Ita Nainggolan, Eijkman Institute, 2003 
  6. 6. Spectrum of β‐Thalassemia mutations & hemoglobinopathies p β g p in Indonesia ACEH BATAK SOUTH CELEBES IVS1‐nt1  HbMalay HbE HbD Los‐Angeles IVS1‐nt5 Poly‐A (Black’s)   Hb LeporePADANG Codon 35IVS1‐nt5  Filipino deletion Codon 35 Poly‐A (Malay)Codon 41‐42 Initiation Codon Codon 17 HbS Poly‐A yMALAYIVS1‐nt5 JAVANESEHbMalay BETAWI SUNDANESE IVS1‐nt5  5 IVS1‐nt5 5 HbE Codon 30HbE IVS1‐nt5      Codon 41‐42 dCodon 26 IVS1‐nt1 IVS1‐nt1  Codon 17 HbE IVS1‐nt1      IVS2‐nt654Codon 41‐42  Codon 35     IVS1‐nt2Codon 15 Codon 15 25bp deletion Codon      C d 8‐9 C d 17     Codon 8IVS1‐nt1 Codon 26     HbG Makassar HbS HbG Sirriraj
  7. 7. Distribution of ‐thalassemia mutations in population  and  thalassemia major patients and ‐thalassemia major patients Mutation distribution (%) Type of mutations Population Patient MILD MUTATION HbE 60 41 HbMalay 16 8.7 HbD Los Angeles 1.8 0 Poly A  (Malay) Poly‐A  (Malay) 0.9 0.9 Poly‐A  (Black) 0.9 0 SEVERE MUTATION IVS1‐nt5 3.6 26 IVS1‐nt1 0 1.7 Cd26 stop 1.8 18 1.3 13 Cd 35 0 10 Cd 41/42 0.9 0.9 Filipino deletion 2.7 3 HbLepore 0.9 6 Eijkman Institute
  8. 8. Distribution of SAO in Indonesia Kimura et al (1998), Yuwono (2002), Kimura et al (2003), Syafruddin (2006), Syafruddin (2007), Megawati (2008)
  9. 9. Estimation of affected population There will be 2,500 affected children will born/year Until October U il O b 2011, 5,000 patients registered patients i all over I d i i d i in ll Indonesia i 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. 10. Problems P bl Increased number of new patients every year Di Diagnosis: Limited number of established laboratory  i  Li it d  b   f  t bli h d l b t   • Established lab only in 6 big cities: Jakarta, Bandung, Semarang,  Surabaya, Yogyakarta, Makasar Treatment :  • High cost: USD 20.000‐30.000/patient/year   • Inadequate quantity and quality of blood  q q y q y • NAT screening not widely used • High incidence rate (33.3%) of hepatitis B/C virus infection, HIV in 2 patients  Iron overload only measured by:   Serum ferritin and transferrin saturation every 3‐6 months  Cardiac iron overload: Echo (Government hospital), T2* MRI available only in  1 private hospital, price quite expensive (USD 230)   i t  h it l   i   it   i  (USD  ) • Under dose of iron chelations: Uncontrolled complications • Limited number of pediatric hematologist • No transplantation program yet
  11. 11. N b f ti t i Number of new patients in Thalassaemia Centre Jakarta (1994-September 2011) Distribution Di t ib ti according to age (N=1,569)• Mean age 14 years old• Range: 9 months – 43 years old
  12. 12. Prevention programs Prevention program  Indonesian Ministry of Health launch Health Technology Assesstment on thalassemia screening protocol and prevention program in 2009  Pilot project in 10 big cities in Indonesia with high gene frequency  G l reduce th number of b t th l Goal: d the b f beta thalassemia major and b t i j d beta thalassemia/HbE patients  Methods:  A t Antenatal screening and f il screening of th th l t l i d family i f the thalassemia i patients and by co‐incidence  Red blood cell indices  Hb analysis l i  PND
  13. 13. Prevention program Other activities:  Professionals:  Indonesian Pediatrics Associations (IDAI): Seminar and workshop to GP and pediatrician outside Jakarta  Indonesian Obstetric‐Gynecology Associations (POGI): Screening the pregnant women and high risk couple, PND g p g g p ,  Obstetricians in Jakarta and some provinces have started to routinely screened for thalassemia during ANC.  Eijkman Institute: Genetic counseling, DNA analysis j g, y  Indonesian Thalassemia foundation with NGO (Rotary)  Mass screening at the thalassemia center for students, office staffs women activities  5 9% carrier beta and HbE staffs, 5.9%  Medical students organization (Center of Medical Students’ Association/CIMSA) with 17 medical faculty from all over Indonesia  4 76% carrier beta and HbE 4.76%
  14. 14. Prevention program P i  I Increased thalassemia awarness to: d h l i  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 • “Thalassemia Awareness Projects” Thalassemia Projects  Public / Layman: • First lady  Thalassemia icon • Mass media (TV, newspaper, radio, magazines); • Thalassemia foundation: Thalassaemia bulletin start in March 2010, p publish every 3 months distributed to 23 POPTI branch, hospitals, y 3 , p , and layman. • Make social events: fund rising, fun bike • Seminar and screening thalassemia on the spot (low prices)
  15. 15. Financial support Government:  Most of patients covered by p y government insurance namely Gakin, Jamkesmas, Jamkesda, SKTM, Askes PNS k  October 2011: Jampelthas: ll ti t hi h covers all patients which not t included in any insurance  Only cover treatment (blood transfusion and iron chelation therapy), without monitoring  USD 750/patient/month
  16. 16. Management September 2011: Thalassemia Diagnosis & Management Guidelines by Indonesian Hematology and Blood Transfusion Association Oral iron chelators  Available since 2007 (DFP caplet)  followed by DFX (2008)  DFP oral solution (2011)
  17. 17. Management Price of blood: USD 30/bag, leucodepleted (ELISA)  high infection  NAT screening not widely used  plus USD 50/bag
  18. 18. Prenatal Diagnosis l i i Total PND 2000 2010: 84 2000‐2010:  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 β‐thalassemia compound heterozygotes but were prenatally diagnosed as heterozygotes. h t t Problem: Government Act: Abortion ONLY 6 weeks of gestation
  19. 19. Summary Thalassemia prevention program in Indonesia has been done as pilot projects starting 1998 government involvement in 1998, 2009 Government start to support national thalassemia campaign campaign, funding for diagnostic and treatment and pilot project for p prevention program p g There are many obstacles to bring this issue as a national p g program such as demographic, ethnicity, and diversity of g p , y, y mutations and phenotypes