2. 1 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

3. 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.

4. 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? 3

5. 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???

6. 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 1 st 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). 5

7. 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 6

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