Newborn Screening for Sickle Cell Disease in Ghana Update

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1 National Programme of Newborn Screening for Sickle Cell Disease Newborn Screening for Sickle Cell Disease in Ghana Update Prof. Kwaku Ohene-Frempong, MD Children s Hospital of Philadelphia University of Pennsylvania Sickle Cell Foundation of Ghana Sickle Cell Foundation of Ghana

2 Newborn Screening for SCD Why screen newborns for sickle cell disease? Sickle Cell Foundation of Ghana

3 Newborn Screening for SCD Causes of Death in SCD-SS (0-10 yr) Overall incidence: 1.1/100 person-yrs (Gill FM, et al, CSSCD: 1995) Sickle Cell Foundation of Ghana

4 Newborn Screening for SCD Bacteremia in SCD-SS Disease, CSSCD Age (yr) < >20 No. pts Person-yr No. events Incidence/ 7,979 2,536 1, Pr-yr Deaths (Zarkowsky,et al. CSSCD; J Pediatr 1986: ) Sickle Cell Foundation of Ghana

5 Newborn Screening for SCD Incidence of Strep. pneumoniae in SCD-SS Disease, CSSCD Age (yr) <1* No. pts Pt.yrs No. events Incidence 6,382 6,343 4, ,445 1, Pr-yr US (98-99)^ * 3 patients were younger than 6 months of age ^ MMWR, 2008 :57; 144 (Zarkowsky,et al. CSSCD; J Pediatr 1986: ) Sickle Cell Foundation of Ghana

6 Newborn Screening for SCD Sickle Cell Foundation of Ghana

7 Newborn Screening for SCD Penicillin Prophylaxis Study (I), CSSCD Penicillin Placebo No.of patients (Person-yr ) Age 3-36m Pneumovax 67% 71.6% Pneumococcal sepsis 2 13 (Incidence/10 5 Pr-yr 1,524 9,455) Deaths 0 3 (Youngest septic patient: 6 mo. old) (Gaston, et al. CSSCD; NEJM 1986: ) Sickle Cell Foundation of Ghana

8 Newborn Screening for SCD Sickle Cell Foundation of Ghana

9 Pneumococcal Disease in Africa Interpretation Introduction of conjugate vaccines against S pneumoniae and H influenzae into the childhood immunisation schedules of African countries could substantially affect survival of children with sickle-cell anaemia Williams, et al., Lancet Oct 17;374(9698):

10 Newborn Screening for SCD Infection in Sickle Cell Disease Malaria and Bacteremia Risks in SCD Kenya 7164 hospitalized children, < 5y, living on the coast of Kenya Age-adjusted odds ratios for disease-specific admission by Hb S genotype Case category Hb AA Hb AS p* SCA p* Uncomplicated malaria 1 Severe malaria 1 Non-malaria illnesses 1 Bacteremia 1 S. pneumoniae ( ) 0.12 ( ) 0.78 ( ) 0.60 ( ) <0.001 < < ( ) 0.80 ( ) 4.17 ( ) 8.73 ( ) 15.3 ( ) <0.001 <0.001 <0.001 Values are ORs (95% CI) compared with the reference group (HbAA) adjusted for age group (0-23 months, months) by logistic regression. McAuley, et al., Blood Sep 9;116(10):

11 Newborn Screening for Sickle Cell Disease in Ghana Kumasi-Tikrom Pilot Project Sickle Cell Foundation of Ghana

12 Newborn Screening for SCD in Ghana Kumasi-Tikrom Pilot Project Project Funding 1. U.S. Government: National Heart, Lung, and Blood Institute (NHLBI) of National Institutes of Health (NIH), Comprehensive Sickle Cell Center Grant: ; ; Government of Ghana Ministry of Health and Ghana Health Service - Staff 3. Children s Hospital of Philadelphia (CHOP) - Staff and donations 4. General public - donations Sickle Cell Foundation of Ghana

13 Newborn Screening for SCD in Ghana Results: Feb 15, 1995 Dec 31, 2011 Hb Phenotype Number Percentage F FA FAC FAS FC FS FSA FSC OTHER TOTAL 343, Babies with SCD totaled 6,025 (1.75%)

14 Newborn Screening for SCD in Ghana Tracking Results: Feb 15, 1995 Dec 31, 2011 Total screened with results 343,355 Babies with Possible SCD 6, Total accounted for 5, Lost to follow-up Total contacted 4, (19% reported, 81% tracked) Dead by contact date Eligible for enrollment 4,810 No. (%) Still under active tracking Known dead after enrollment 4.5

15 KUMASI CENTER FOR SICKLE CELL DISEASE Clinic Population SCD Clinic started on 14 th December, 1992 with 10 adult patients Total Number of registered patients in Clinic by 30 th September, 2011: Newborn screened: 4,028 Non-newborns: 8,168 GRAND TOTAL 12,196

16 Kumasi Centre for Sickle Cell Disease Appointments-Routine Clinic Visits Frequency of well-child visits: Less than 2 yrs: Every 2 mo More than 2 yrs: Every 3 mo Adolescents and adults: every 4-6 mo Patients may be seen more frequently depending on clinical status

17 Kumasi Centre for Sickle Cell Disease Antimicrobial Prophylaxis Penicillin prophylaxis: o o o Recommended for the first five years but may be optional after 5 years 125 mg twice daily (< 3 yr old); 250 mg twice daily (> 3 yr old). o Erythromycin ethyl succinate (EES) 10 mg/kg/dose, twice daily for those allergic to penicillin Anti-malaria Chemoprophylaxis:?? Unclear recommendation: NMCP POLICY for high

18 Newborn Screening for SCD in Ghana Kumasi-Tikrom Pilot Project Conclusions 1. Newborn screening for SCD makes sense in Africa. 2. Implementation of a Public Health Newborn Screening Programme is feasible in Ghana in both rural and urban settings. 3. Ghanaian healthcare systems and staff can support all phases of comprehensive management of SCD. 4. Children with SCD born in Ghana, diagnosed at birth and given comprehensive healthcare, have reduced mortality. Sickle Cell Foundation of Ghana

19 Newborn Screening for SCD in Ghana Progress Report (1/2) 1. US funding for pilot project ended March Screening has continued with support from MOH, GHS, Children s Hospital of Philadelphia, and Sickle Cell Foundation of Ghana (SCFG) 3. SCFG proposal for national scale-up submitted to Ministry of Health 2006 and : Planning meetings among MOH, Ghana Health Service, SCFG, National Health Insurance Authority 5. SCFG secures support from Brazil Government Sickle Cell Foundation of Ghana

20 Newborn Screening for SCD in Ghana Progress Report (2/2) 6. Brazil-Ghana Technical Cooperation Agreement in SCD signed (Sep 2009) 7. National Programme of Newborn Screening for SCD launched Nov 2010 Technical Advisory Committee inaugurated Screening Plan submitted to MOH, Nov 2011 Steering Committee being established 8. National scale-up in ALL other Regions, Initial Regional Training Workshops completed Nov, Sickle Cell Foundation of Ghana

21 Ghana: National Newborn Screening Program Technical Advisory Committee DRAFT POLICY FOR NEWBORN SCREENING IN GHANA AND TECHNICAL PLAN FOR NATIONAL SCALE UP OF NEWBORN SCREENING FOR SICKLE CELL DISEASE November 1, 2011

22 Newborn Screening for SCD in Ghana Population: Birth Rate: 25.2 million No. of Births: 680,148 SCD Rate: No. SCD babies 12,243 SCD Births in Ghana (2012 Estimates) / 1,000 population 1.8% (pilot newborn screening data) Sickle Cell Foundation of Ghana

23 Ghana: National SCD Programme Organization of Centres for Sickle Cell Disease National Coordinating Centre Regional Centre for SCD Sub-Regional Centres for SCD Sickle Cell Foundation of Ghana

24 Ghana: National Newborn Screening Program Initial Education and Training Program Training Program 1: Training Program 2: Training Program 3: Training Program 4: Public Health Workers Clinical Staff of Centers Sample Collectors Data Entry Staff Counselor Training and Certification Program

25 Ghana: National Newborn Screening Program Training Program 1 Regional Workshops on Newborn Screening for Sickle Cell Disease

26 Ghana: National Newborn Screening Program Training Program 1:Regional Workshops H H H H H H H

27 Ghana: National Newborn Screening Program NNbSP-SCD Training Program 1 (2011) Trainees by Profession Community Health Nurses 60 (10.9) General Nurses 80 (14.5) Public Health Nurses 85 (15.4) Midwives Doctors Physician Assists. 127 (23.0) 111 (20.0) 54 (9.8) Others 34 (6.4) TOTAL 551 (100)

28 Ghana: National Newborn Screening Program NNbSP-SCD Training Program 1 (2011): Trainees % Total # % % % Other REGIONS Prescriber Professionals Midwives Nurses Professions s (%) Ashanti (9.8) Brong Ahafo (11.1) Central (12.9) Eastern (14.5) Great. Accra (14.9) Northern (8.5) Upper East (4.4) Upper West (2.0) Volta (10.9) Western (12.2) ALL Regions 125 (22.7) 247 (44.8) 174 (31.6) 5 (0.9) 551 (100)

29 Workshop on Newborn Screening for Sickle Cell Disease Pre- and Post-Test Test No. of Participants Average % Correct Median % Correct Pre-Test Post-Test Sickle Cell Foundation of Ghana

30 Newborn Screening Workshop Pre- and Post-test Question 3 List the four most common types of SCD Test % Correct Pre-Test 1 Post-Test 84 Sickle Cell Foundation of Ghana

31 Newborn Screening Workshop Pre- and Post-test Young children with severe SCD lose function of their spleen after 5 years of age Test Question 17 True / False % Correct Pre-Test 44 Post-Test 35 Sickle Cell Foundation of Ghana

32 Newborn Screening Workshop Pre- and Post-test Question 24 What is the most important treatment after newborns are diagnosed with SCD? Test % Correct Pre-Test 8 Post-Test 90 Sickle Cell Foundation of Ghana

33 National Newborn Screening Program Training Program 1: Regional Workshop Takoradi, Western Region, Nov 11-12, 2011

34 National Newborn Screening Program Training Program 1: Regional Workshop Koforidua, Eastern Region, Nov 17-18, 2011

35 International Partnership in SCD: Ghana Brazil-Ghana Partnership 1. October 2008: Application is submitted by Sickle Cell Foundation of Ghana to Brazilian Ambassador to Ghana 2. February 2009: Prof. Ohene-Frempong meets with President Mills; and, President Mills meets with Brazilian Ambassador 3. July 2009: 1 st Complementary Agreement is signed in Accra (Complementary to original 1974 Brazil-Ghana Technical Cooperation Agreement) 4. August-October 2009: Training in Brazil (Lab Techs and Nurses) 5. October 2009: Year 1 Technical Agreement is signed in Brazil 6. February 2011: 2 nd Complementary Agreement is signed in Accra Sickle Cell Foundation of Ghana

36 International Partnership in SCD: Ghana Brazil-Ghana Partnership Program Areas 1. Expansion of Screening Laboratory Capacity 2. Training of Lab Technologists, Nurses 3. Development of Educational Materials and Educational Program 4. Expansion of IT system and network 5. Construction of Blood and Sickle Cell Center in Kumasi Sickle Cell Foundation of Ghana

37 Thank you!

38 Brazil-Ghana Technical Cooperation in SCD Training of Technicians in Brazil, August 2009

39 Brazil-Ghana Technical Cooperation in SCD2 nd Brazilian Delegation Meets President Mills, Dec 09

40 Brazil-Ghana Technical Cooperation in SCD Asantehene Fetes 2 nd Brazilian Delegation, Dec 09

41 Brazil-Ghana Technical Cooperation in SCD Asantehene Fetes 2 nd Brazilian Delegation, Dec 09

42 Brazil-Ghana Blood and Sickle Cell Center Computer Model

43 Brazil-Ghana Blood and Sickle Cell Center Computer Model

44 Brazil-Ghana Technical Cooperation in SCD Brazil-Ghana Blood and Sickle Cell Center Survey of Plot at KATH

45 Brazil-Ghana Technical Cooperation in SCD Kumasi Blood and Sickle Cell Center Groundbreaking, Nov 25, 2010