Sickle Cell Service to Humanity Foundation, Katsina State, Nigeria: Exploratory Visit

Transcription

1 Sickle Cell Service to Humanity Foundation, Katsina State, Nigeria: Exploratory Visit Nigerian Sickle Cell Cohort Team, UNDP N-253 project contact ( ) Dr Baba Inusa (Chief Investigator) Dr Uduak Essen (Project Coordinator) CarDan Charity Rep Suleiman Baba Mohammed Her Excellency, Dr Fatima I. Shema, Founder Service to Humanity Foundation (SHP) SHP members Alh Lawal Yunusa Charanchi (Coordinator-SHP) Hajiya Halima Idowu (Coordinator Sickle Cell SHP)

2 Sickle Cell Service to Humanity Foundation, Katsina State, Nigeria: Exploratory Visit Nigeria Sickle Cell Cohort Study team Rational For Newborn Screening for Sickle Cell Disease The Case For SCD Screening Africa N-253 UNDP Pilot Project Developing a Pathway Partnership with Katsina

3 Sickle Cell Service to Humanity Foundation, Katsina State, Nigeria: Exploratory Visit Left to right Dr Funke Lawson, medical director Zankli and Investigator Nigeria Dr Yvonne Daniel, Scientfic Advisor Dr Baba Inusa Dr Uduak Essen Prof S Obaro, Michigan State University and Deputy Chief Investigator

4 Sickle Cell Service to Humanity Foundation, Katsina State, Nigeria: Exploratory Visit Fantsuam Foundation Partner Sickle Cell Cohort Study- N-253 From left- Dr Baba Inusa, Mrs Bola Ojo,Overall project manager Dr John Dada, Chief Exceuttive Fantsuam Foundation Dr Yvonne Daniel

5 Newborn Screening for SCD Design Goals Public-health based, pilot project for national screening program Test ALL babies born in urban and rural communities at birth or at first postnatal visit Transport samples to distant screening laboratory Track ALL babies with SCD and refer to Sickle Cell Clinic Provide longitudinal, comprehensive care through Sickle Cell Clinic and hospital Develop and implement database systems for tracking of ALL babies screened and monitor clinical care for children with SCD Evaluate screening project on regular basis

6 Newborn Screening for Sickle Cell Disease Justification 1. Very common, serious condition with clinical manifestations starting in infancy Aged 6-12mo had highest mortality rate. 2. Simple, accurate diagnostic tests available Isoelectric focusing, HPLC methods highly accurate and simple 3. Proven life-saving, inexpensive preventive treatment available Penicillin prophylaxis is simple, inexpensive, and effective

7 Newborn Screening for Sickle Cell Disease and Other Hemoglobinopathies National Institutes of Health Consensus Development Conference Statement April 6-8, 1987 Conclusions (cont d) 5. To be effective, neonatal screening must be part of a comprehensive program for the care of sickle cell patients and their families. These services must include a network of providers who ensure optimal medical care, psychosocial support, and genetic counseling. Such follow-up capabilities should be in place before screening is instituted. 6. Further research should focus on the following: improving and evaluating the technology for screening; In summary, the panel concludes that every child should be screened for hemoglobinopathies to prevent the potentially fatal complications of sickle cell disease during infancy.

8 Newborn Screening for Sickle Cell Disease and Other Hemoglobinopathies National Institutes of Health Consensus Development Conference Statement April 6-8, 1987 Conclusions 1. Effective intervention in children with sickle cell disease provides a major impetus for neonatal screening. Prophylactic penicillin therapy provided in a setting of comprehensive care has been found to significantly reduce the morbidity and mortality of patients with pneumococcal sepsis. 3. The benefits of screening are so compelling that universal screening should be provided. State law should mandate the availability of these services while permitting parental refusal. 4. Centralization of laboratory services improves efficiency and decreases the probability of error.

9 Newborn Screening for Sickle Cell Disease in the U.S. 1. ALL babies screened for SCD and Other Hemoglobinopathies as part of state-organized newborn screening programs 2. Good evidence that newborn screening followed by comprehensive medical care including parental health education, penicillin prophylaxis, and antipneumococcal vaccination have reduced early mortality in SCD

10 Newborn Screening for Sickle Cell Disease in Africa What is the justification in Africa? Mortality from pneumococcal sepsis in infancy? Mortality from malaria in infancy? Is there justification for anti-malarial or antipneumococcal prophylaxis in Africa?

11 Sickle Cell Disease in Africa High childhood mortality Fleming, 1989: < 2% of expected number of children with SCD survived beyond 5 years in a rural community. Athale and Chintu, 1994: SCD 2.92% of pediatric admissions; case fatality (per admit), 6.61%, (55% for.5-5yr) Thuilliez and Vierin, 1997: 8.4% of childhood deaths due to SCD Koko, et al., 1998: 7.2% of childhood deaths at due to SCD

12 Sickle Cell Disease in Africa Burden of Sickle Cell Disease in Africa Total Population (2000) 855,243,217 >140,000,000 Births/ Total Births 29,632,950 5,600,000 Total SCD 1% 296, % 444,495 28th June 2.0% , ,000

13 Newborn Screening for Sickle Cell Disease in Africa No country in Africa has implemented national, newborn screening program for sickle cell disease. Most children with SCD in Africa are not diagnosed before clinical presentation, complications, or death.

14 EC-UNDP GRANT- N-253 Brussels Abuja 18 Month Grant to support the Pilot 1 st HPLC machine in Nigeria to support the diagnosis of SCD from birth Community and Hospital project in Nigeria FCT and Kaduna State

15 Sickle Cell Service to Humanity Foundation, Katsina State, Nigeria: Exploratory Visit Laboratory Staff Training at Zankli Medical Centre HPLC machine June 2010

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17 Newborn Screening for Sickle Cell Disease Newborn screening is not JUST a blood test!

18 Newborn Screening for Sickle Cell Disease Organization of a Newborn Screening System 1. Screening: testing of newborns 2. Follow-up: short-term follow-up and referral of testpositive infants 3. Diagnosis: definitive diagnosis of disease 4. Management: planning and implementation of longterm therapy 5. Evaluation: validation of procedures assessment of interventions and outcomes

19 Newborn Screening for SCD in Ghana Tracking Babies with SCD Tracking Babies to Homes 32 Nurses are involved in tracking. Nurse Coordinators send screening results to the Public Health and Community Health Nursess in the screening health facilities for follow-up. Visits days are at the discretion of the nurses i.e after working hours and weekends. Families tracked based on directions given by mother at delivery

20 Newborn Screening for Sickle Cell Disease in Nigeria Organizational Structure Nigeria Sickle Cell Cohort Zankli / Fantsuam F. Laboratory Counsel Screening Education Clinic Review by NiSCOR board/msu and GSTT

21 Newborn Screening for Sickle Cell Disease in Africa WHO: Has recognized SCD as a major public health problem Has recommended member nations to develop comprehensive programs to control SCD, including early diagnosis ALL African and other nations where SCD is common should embark on newborn screening for SCD as a public health program

22 Sickle Cell Service to Humanity Foundation, Katsina State, Nigeria: Outcome of Discussion Scope for Collaboration with Katsina State Her Excellency support and keenness to engage international community. A motivated foundation with over 7000 patients receiving free medication and Specialist Maternities and Children Hospitals Conditions for Extension of Project to Katsina Funding to cover additional equipment (HPLC), Vehicle for community survey and follow up + overall activities Ethical Clearance from the State Equipment procurement, Staff Training and Skill transfer Diaspora experts and technical staff visit to support work