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PHILIPPINES


     ERNESTO d’J. YUSON, M.D.
   Thalassemia Center of the Philippines
               Balikatang Thalassemia
DEMOGRAPHIC DATA

•   POPULATION - 92-95M
•   ETHNIC GROUPS: Chinese, Malay,
                                y
    Spanish
•   ANNUAL BIRTH RATE:
•   AVERAGE INCOME: Php 14, 676
    (
    (USD 349.00) per capita
                 )p      p
•   EMPLOYMENT RATE: 39.4%

•   NATIONAL HEALTH BUDGET: Php 3.2T
                                3 2T
    (USD 7.27B)
DEMOGRAPHIC DATA
                  (National Statistics Office)
Population (August 2007)            88.57M
                                    88 57M
Projected Population (2010)         94.01M
Inflation Rate (Aug 2011)            4.7%
Balance of Trade (June 2011)        $ -376M
Exports (July 2011)                 $ 4.430B
Imports (June 2011)
I      t (J                         $ 4 503B
                                      4.503B
Unemployment (July 2011)              7.1%
Underemployment (July 2011)         19.1%
Simple Literacy (2000)               92.3%
Functional Literacy (2008)           86.4%
Average Family Income (2009)        Php 206,000 ($4790)
GNP (Q4 2010)                       Php 2,760.1B
GDP (Q4 2010)                       Php 2 421 9B
                                           2,421.9B
DEMOGRAPHIC DATA

• POPULATION         (2007) 709 people per sq k
                                           l           km
•   Annual Population Growth rate (2000-2007):
              p                     (                )
    3.2%
•   Average births per woman/ total fertility rate (2003)
    3.2%
•   N d f f il planning: 16%
    Need for family l       i
•   Infant mortality rate (2006): 20 infant deaths per
    1,000 live births
HEALTH SYSTEM

• PUBLIC / GOVERNMENT:
• PRIVATE SECTOR:
• RE-IMBURSEMENT POLICY: PhilHealth,
  (HMOs, Personal & F il I
  (HMO P        l Family Insurance)
                                  )
• SPECIAL POLICIES O CHRONIC
  S C       O C S ON C O C
  ILLNESS – NONE YET
• ANY SPECIAL POLICIES ON Hb d/o
                               d/o:
  NONE YET
• Incidence of Beta thalassemia in the
  Philippines is relatively low ( pp
       pp                  y     (approx <1%).
                                             )
• The most common (approx 50%) mutation
  is the “Filipino” deletion (b i i approximately
          Filipino           (beginning   i t l
  4Kb upstream of the B-globin gene and extending
  beyond it)
• followed by the codon 67 (-TG) 26 percent
  (Waye et al, 1994 K et al, 1998)
  (W     t l 1994; Ko t l
EPIDEMIOLOGY (TCP/ Ba-THa)
                        Ba THa)

•   Alpha carrier rate:       ?
•   Beta thal carrier rate:   ?
•   E-thal carrier rate:      ?
•   S-thal carrier rate:      ??
EPIDEMIOLOGY (TCP/ Ba-Tha Registry)
                    Ba Tha

TOTAL =                   706
• Alpha carrier/ trait:
    p                     263
• Hemoglobin H disease:    16
• Beta thal major:         39
• Beta thal minor:        348
• HbE/ Beta Thal:          39
• Hemoglobin E:             1
• Sickle cell anemia:     none
EPIDEMIOLOGY (TCP/ Ba-THa Registry)
                    Ba THa

TOTAL                            706

Alpha carrier/trait               263
Hemoglobin H disease               16
Beta Thalassemia Major             39
Beta Thalassemia Minor            348
Beta Thal – E interacting          39
Hemoglobin E                        1
Sickle Cell Anemia               none
EPIDEMIOLOGY (TCP/ Ba-Tha Registry)
                    Ba Tha
TOTAL                       706                   1,506
                                                  1 506
                                               Extrapolate:
                                   (taking into account the
                                       parents of the index
                                                      case)
Alpha
Al h carrier/trait
           i /t it           263      263 + 263 = 526
Hemoglobin H disease          16         16 + 32 = 48
Beta Thalassemia Major        39         39 +78 =117
Beta Thalassemia Minor       348      348 + 348 =696
Beta Thal – E interacting     39         39 +78 =117
Hemoglobin E                   1              1+1 = 2
Sickle Cell Anemia          none                    0
By HPLC (2008 – June 2011)
•   Alpha thalassemia -                                       60
•   Hemoglobin H -
    H      l bi                                               11
•   Beta thalassemia -                                       167
•   Beta thalassemia-E interacting –                          10
•   Hemoglobin E –
    H      l bi                                                4
•   Alpha Beta Thal –
      p a ea a                                                 4

•   463 Total samples from 2008 to June 3 2011
                                    Institute of Human Genetics , 2011
Patient s
           Patient’s Registry

• Balikatang Thalassemia
• Thalassemia Center of the Philippines
• PSHBT
National Prevention Program

• Local – Balikatang Thalassemia/
                                 pp
  Thalassemia Center of the Philippines
       - local communities NCR
• R i
  Regional l
• National
   at o a
Diagnostic Services Available
• Population screening – none yet
     p                 g         y
• Prenatal diagnosis – none yet
• Antenatal diagnosis – none yet
  A t     t l di     i             t
• Genetic counseling – available
                     g
• Molecular diagnostic facilities – research
  level only
• Primary clinic level or hospital ( g
         y                   p     (regional or
  national)
Diagnostic Services Available

• CBC – standardization lacking
• Hemoglobin electrophoresis (5)
  – hospital based
  – standardization l ki
     t d di ti lacking
  – Costly (from P3000 – 10,000)/ $71 -$238
• HPLC (1) Institute of Human Genetics
  – cost P1 000 / $23
         P1,000
BLOOD AND BLOOD COMPONENTS

•   NATIONAL POLICY ON BLOOD
•   NON REMUNERATED
    NON-REMUNERATED
•   REPLACEMENT
•   PAID DONOR (stopped since 1997)
BLOOD and BLOOD COMPONENTS

• Philippine Blood Center (PBC)
  – 100% volunteer/ non-remunerated
       %
• Philippine Red Cross (PRC)
  – 100% volunteer/ non-remunerated
           l t /                t d
• Hospital Blood Banks
     p
  – Volunteer/ non-remunerated 50-80%
  – As replacement donors 20 50%
                          20-50%
BLOOD and BLOOD COMPONENTS

• Volunteer / Non- Remunerated – 44%
• Replacement Donor - 45%
• Both – 11%

     Naranjo, L. and Yuson, E., Survey of Transfusion Patterns and
         Practices among Thalassemia Patients in the Philippines”,
                      Thalassemia Center of the Philippines, 2011
BLOOD and BLOOD COMPONENTS

• NATIONAL VOLUNTEER BLOOD
  SERVICES PROGRAM
 – PHILIPPINE BLOOD CENTER (technical
   arm)
 – PHILIPPINE BLOOD COORDINATING
   COUNCIL (educational arm)
 – PHILIPPINE RED CROSS (NGO sector)
BLOOD and BLOOD COMPONENTS

• National Blood Services Act of 1994
  – To promote and encourage voluntary blood
       p                      g           y
    donation by the citizenry and to instill public
    consciousness of the principle that blood
                           p     p
    donation is a humanitarian act
  – To lay down the legal principle that the
    provision of blood for transfusion is a
    professional medical service and not a sale of
    a commodity
BLOOD and BLOOD COMPONENTS

- to mobilize all sectors of the community to
participate in mechanisms for voluntary and non-
profit collection of blood;

- to mandate the Department of Health to establish
and organize a National Blood Transfusion Service
Network in order to rationalize and improve the
provision of adequate and safe supply of blood;
BLOOD and BLOOD COMPONENTS


- to provide for adequate assistance to institutions
promoting voluntary blood donation and providing
non-profit blood services, either through a system
of reimbursement for costs from patients who can
afford to pay or donations from governmental and
non-governmental entities;
BLOOD and BLOOD COMPONENTS

- to require all blood collection units and blood
banks/centers to operate on a non-profit basis;

- to establish scientific and professional standards
for the operation of blood collection units and
blood banks/centers in the Philippines;
BLOOD and BLOOD COMPONENTS

- to regulate ensure the safety of all activities
related to the collection, storage and banking of
blood

- to require upgrading of blood banks/centers to
include preventive services an education to control
spread of blood transfusion transmissible
diseases.
BLOOD AND BLOOD COMPONENTS

• PERCENTAGE DONATED TO
  THALASSEMICS – approx 2 – 5%
                       pp
• BLOOD TRANSFUSION – screening and
  processing fee P 1 100 00 ($ 26 19)
                   1,100.00 26.19)
• HOW OFTEN ARE PATIENTS WITH
  THALASSEMIA TRANSFUSED – 3 – 12
  wks
BLOOD AND BLOOD COMPONENTS

• Pre-transfusion hemoglobin: 8.1- 9 gms
                              (23%)
• Post transfusion hemoglobin: 10 – 10.9g
                               (33%)

    Naranjo, L. and Yuson, E., “ Survey of Transfusion Patterns and
         Practices among Thalassemia Patients in the Philippines ,
                                                       Philippines”,
                       Thalassemia Center of the Philippines, 2011
IRON CHELATION

• ALL 3 CHELATORS ARE AVAILABLE
  AND REGISTERED
• IRON CHELATORS ARE EXPENSIVE
• PURCHASED BY PERSONAL FUNDS
• DFO
• DEFERIPRONE
           O
• EXJADE
• DFO+ DEFERIPRONE
MULTIDISCIPLINARY TEAMS FOR
CARDIAC AND ENDOCRINE PROBLEMS
• Centers with Thalassemia Units – multi-
  specialty clinics to handle the
   p      y
  multidisciplinary approach to patients
• No National Policy or Program on this yet
AVAILABILITY OF MRI FACILITIES

• MRI available
• T2* TECHNOLOGY - none
  T2
REFERENCE EXPERT CENTERS

• Thalassemia Center of the Philippines
  (
  (TCP), since 1995
       ),
• Balikatang Thalassemia Foundation
  (Ba-Tha), since 1993
• Other tertiary hospitals with in-house
  Hematology Units / Hematologists, others
            gy                    g   ,
  established their own Thalassemia centers

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

  • 1. PHILIPPINES ERNESTO d’J. YUSON, M.D. Thalassemia Center of the Philippines Balikatang Thalassemia
  • 2. DEMOGRAPHIC DATA • POPULATION - 92-95M • ETHNIC GROUPS: Chinese, Malay, y Spanish • ANNUAL BIRTH RATE: • AVERAGE INCOME: Php 14, 676 ( (USD 349.00) per capita )p p • EMPLOYMENT RATE: 39.4% • NATIONAL HEALTH BUDGET: Php 3.2T 3 2T (USD 7.27B)
  • 3. DEMOGRAPHIC DATA (National Statistics Office) Population (August 2007) 88.57M 88 57M Projected Population (2010) 94.01M Inflation Rate (Aug 2011) 4.7% Balance of Trade (June 2011) $ -376M Exports (July 2011) $ 4.430B Imports (June 2011) I t (J $ 4 503B 4.503B Unemployment (July 2011) 7.1% Underemployment (July 2011) 19.1% Simple Literacy (2000) 92.3% Functional Literacy (2008) 86.4% Average Family Income (2009) Php 206,000 ($4790) GNP (Q4 2010) Php 2,760.1B GDP (Q4 2010) Php 2 421 9B 2,421.9B
  • 4. DEMOGRAPHIC DATA • POPULATION (2007) 709 people per sq k l km • Annual Population Growth rate (2000-2007): p ( ) 3.2% • Average births per woman/ total fertility rate (2003) 3.2% • N d f f il planning: 16% Need for family l i • Infant mortality rate (2006): 20 infant deaths per 1,000 live births
  • 5. HEALTH SYSTEM • PUBLIC / GOVERNMENT: • PRIVATE SECTOR: • RE-IMBURSEMENT POLICY: PhilHealth, (HMOs, Personal & F il I (HMO P l Family Insurance) ) • SPECIAL POLICIES O CHRONIC S C O C S ON C O C ILLNESS – NONE YET • ANY SPECIAL POLICIES ON Hb d/o d/o: NONE YET
  • 6. • Incidence of Beta thalassemia in the Philippines is relatively low ( pp pp y (approx <1%). ) • The most common (approx 50%) mutation is the “Filipino” deletion (b i i approximately Filipino (beginning i t l 4Kb upstream of the B-globin gene and extending beyond it) • followed by the codon 67 (-TG) 26 percent (Waye et al, 1994 K et al, 1998) (W t l 1994; Ko t l
  • 7. EPIDEMIOLOGY (TCP/ Ba-THa) Ba THa) • Alpha carrier rate: ? • Beta thal carrier rate: ? • E-thal carrier rate: ? • S-thal carrier rate: ??
  • 8. EPIDEMIOLOGY (TCP/ Ba-Tha Registry) Ba Tha TOTAL = 706 • Alpha carrier/ trait: p 263 • Hemoglobin H disease: 16 • Beta thal major: 39 • Beta thal minor: 348 • HbE/ Beta Thal: 39 • Hemoglobin E: 1 • Sickle cell anemia: none
  • 9. EPIDEMIOLOGY (TCP/ Ba-THa Registry) Ba THa TOTAL 706 Alpha carrier/trait 263 Hemoglobin H disease 16 Beta Thalassemia Major 39 Beta Thalassemia Minor 348 Beta Thal – E interacting 39 Hemoglobin E 1 Sickle Cell Anemia none
  • 10. EPIDEMIOLOGY (TCP/ Ba-Tha Registry) Ba Tha TOTAL 706 1,506 1 506 Extrapolate: (taking into account the parents of the index case) Alpha Al h carrier/trait i /t it 263 263 + 263 = 526 Hemoglobin H disease 16 16 + 32 = 48 Beta Thalassemia Major 39 39 +78 =117 Beta Thalassemia Minor 348 348 + 348 =696 Beta Thal – E interacting 39 39 +78 =117 Hemoglobin E 1 1+1 = 2 Sickle Cell Anemia none 0
  • 11. By HPLC (2008 – June 2011) • Alpha thalassemia - 60 • Hemoglobin H - H l bi 11 • Beta thalassemia - 167 • Beta thalassemia-E interacting – 10 • Hemoglobin E – H l bi 4 • Alpha Beta Thal – p a ea a 4 • 463 Total samples from 2008 to June 3 2011 Institute of Human Genetics , 2011
  • 12. Patient s Patient’s Registry • Balikatang Thalassemia • Thalassemia Center of the Philippines • PSHBT
  • 13. National Prevention Program • Local – Balikatang Thalassemia/ pp Thalassemia Center of the Philippines - local communities NCR • R i Regional l • National at o a
  • 14. Diagnostic Services Available • Population screening – none yet p g y • Prenatal diagnosis – none yet • Antenatal diagnosis – none yet A t t l di i t • Genetic counseling – available g • Molecular diagnostic facilities – research level only • Primary clinic level or hospital ( g y p (regional or national)
  • 15. Diagnostic Services Available • CBC – standardization lacking • Hemoglobin electrophoresis (5) – hospital based – standardization l ki t d di ti lacking – Costly (from P3000 – 10,000)/ $71 -$238 • HPLC (1) Institute of Human Genetics – cost P1 000 / $23 P1,000
  • 16. BLOOD AND BLOOD COMPONENTS • NATIONAL POLICY ON BLOOD • NON REMUNERATED NON-REMUNERATED • REPLACEMENT • PAID DONOR (stopped since 1997)
  • 17. BLOOD and BLOOD COMPONENTS • Philippine Blood Center (PBC) – 100% volunteer/ non-remunerated % • Philippine Red Cross (PRC) – 100% volunteer/ non-remunerated l t / t d • Hospital Blood Banks p – Volunteer/ non-remunerated 50-80% – As replacement donors 20 50% 20-50%
  • 18. BLOOD and BLOOD COMPONENTS • Volunteer / Non- Remunerated – 44% • Replacement Donor - 45% • Both – 11% Naranjo, L. and Yuson, E., Survey of Transfusion Patterns and Practices among Thalassemia Patients in the Philippines”, Thalassemia Center of the Philippines, 2011
  • 19. BLOOD and BLOOD COMPONENTS • NATIONAL VOLUNTEER BLOOD SERVICES PROGRAM – PHILIPPINE BLOOD CENTER (technical arm) – PHILIPPINE BLOOD COORDINATING COUNCIL (educational arm) – PHILIPPINE RED CROSS (NGO sector)
  • 20. BLOOD and BLOOD COMPONENTS • National Blood Services Act of 1994 – To promote and encourage voluntary blood p g y donation by the citizenry and to instill public consciousness of the principle that blood p p donation is a humanitarian act – To lay down the legal principle that the provision of blood for transfusion is a professional medical service and not a sale of a commodity
  • 21. BLOOD and BLOOD COMPONENTS - to mobilize all sectors of the community to participate in mechanisms for voluntary and non- profit collection of blood; - to mandate the Department of Health to establish and organize a National Blood Transfusion Service Network in order to rationalize and improve the provision of adequate and safe supply of blood;
  • 22. BLOOD and BLOOD COMPONENTS - to provide for adequate assistance to institutions promoting voluntary blood donation and providing non-profit blood services, either through a system of reimbursement for costs from patients who can afford to pay or donations from governmental and non-governmental entities;
  • 23. BLOOD and BLOOD COMPONENTS - to require all blood collection units and blood banks/centers to operate on a non-profit basis; - to establish scientific and professional standards for the operation of blood collection units and blood banks/centers in the Philippines;
  • 24. BLOOD and BLOOD COMPONENTS - to regulate ensure the safety of all activities related to the collection, storage and banking of blood - to require upgrading of blood banks/centers to include preventive services an education to control spread of blood transfusion transmissible diseases.
  • 25. BLOOD AND BLOOD COMPONENTS • PERCENTAGE DONATED TO THALASSEMICS – approx 2 – 5% pp • BLOOD TRANSFUSION – screening and processing fee P 1 100 00 ($ 26 19) 1,100.00 26.19) • HOW OFTEN ARE PATIENTS WITH THALASSEMIA TRANSFUSED – 3 – 12 wks
  • 26. BLOOD AND BLOOD COMPONENTS • Pre-transfusion hemoglobin: 8.1- 9 gms (23%) • Post transfusion hemoglobin: 10 – 10.9g (33%) Naranjo, L. and Yuson, E., “ Survey of Transfusion Patterns and Practices among Thalassemia Patients in the Philippines , Philippines”, Thalassemia Center of the Philippines, 2011
  • 27. IRON CHELATION • ALL 3 CHELATORS ARE AVAILABLE AND REGISTERED • IRON CHELATORS ARE EXPENSIVE • PURCHASED BY PERSONAL FUNDS • DFO • DEFERIPRONE O • EXJADE • DFO+ DEFERIPRONE
  • 28. MULTIDISCIPLINARY TEAMS FOR CARDIAC AND ENDOCRINE PROBLEMS • Centers with Thalassemia Units – multi- specialty clinics to handle the p y multidisciplinary approach to patients • No National Policy or Program on this yet
  • 29. AVAILABILITY OF MRI FACILITIES • MRI available • T2* TECHNOLOGY - none T2
  • 30. REFERENCE EXPERT CENTERS • Thalassemia Center of the Philippines ( (TCP), since 1995 ), • Balikatang Thalassemia Foundation (Ba-Tha), since 1993 • Other tertiary hospitals with in-house Hematology Units / Hematologists, others gy g , established their own Thalassemia centers