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Diaspora-led coalition for health systems support & engaging communities:

Diaspora-led coalition for health systems support & engaging communities: any lessons from the sickle cell disease campaign?. Dr Asa’ah Nkohkwo FRSPH Technical Adviser, London Focus Sickle Cell in Africa, Member: CamDocUK, TMG UK & FFF Cameroon Presentation to APPG-Malaria, London 29 Sept 2012.

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Diaspora-led coalition for health systems support & engaging communities:

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  1. Diaspora-led coalition for health systems support & engaging communities: any lessons from the sickle cell disease campaign? Dr Asa’ah Nkohkwo FRSPHTechnical Adviser, London Focus Sickle Cell in Africa,Member: CamDocUK, TMG UK & FFF CameroonPresentation to APPG-Malaria, London 29 Sept 2012

  2. Worldwide Distribution Haemoglobin S Sickle Cell Disorder is found in Africans, Turks, Greeks, Saudi Arabians, Egyptians, Iranians, Italians, Latin Americans and Asiatic Indians. MALARIA ENDEMIC ZONES !!!!! Sickle cell trait is present in 1 in 4 West Africans, 1 in 10 African-Caribbeans, 1 in 10 Greeks and 1 in 50 Asians. It can also be found in 1 in 1000 White British. Beta Thalassaemia trait is found in 1 in 7 Greek Cypriots, 1 in 12 Turkish. It is less frequent in Asians, African-Caribbeans and White British.

  3. Sickle Cell Inheritance: prevalence • Up to 1 in 4 silent carriers in people of West African descent • Up to 1 in 50 “full-blown” sufferers • 350 (UK) & 200,000 (Africa) babies born every year with sickle cell • 80% 5yr Mortality rate in African sickle babies; normalising in the UK • Could countless Africans be already genetically compromised?

  4. Care Pathway - Summary • Newborn identification • Parent notification, education, provision of parent handbook, community support • Symptomatic treatment: pain & crisis • Prophylactic penicillin & pneumovax • Referral Care & Reviews • N-S COLLABORATION with • MALARIA INTERVENTION???

  5. N-S COLLABORATIONS:lessons from/ story of the sickle-cell campaign, “from the margins to the mainstream” (2004-2008) • From UK (SCS) to Paris (OILD) to UNESCO (role of African 1st Ladies) • Through the WHO to the WHA (Res 59.20 of May 2006) & the UN World Sickle Cell Day from 2008. • Political & Technical implications as a result. • IMPACT: UK NHS, APPG SC&T, Pharma sponsorship attracted • IMPACT: African govts slow but improving commitment : Congo-B, Senegal, Benin, Nigeria (notably HE Obasanjo), Cameroon... • Budding NS technical collaborations: • London Focus (Nigeria, Cameroon, Ghana, S-Leone), Salem Health (London- Kinshasa).

  6. BUILDING COALITIONS & ENGAGING COMMUNITIES • DIASPORA COALITIONS: • Professional & Homeland Associations • Require: • Mapping (workshop Q-1) • Identifying & engaging leaders • Convergence of group interests (Q-2) • Anchorage (universities & embassies etc) • Resources: time & money (Q-3) • Other challenges/ barriers (Q-4) • Creating linkages: N-N, N-S, S-S

  7. ACKNOWLEDGEMENTS • SLIDES (NHS BRENT SC Centre) • PATIENTS • DIASPORA COLLABORATIONS • www.sicklecellsociety.org • www.londonfocussicklecellafrica.org • www.tmg-foundation.org • THANK YOU !

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