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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

Worldwide DistributionWorldwide Distribution

Haemoglobin SHaemoglobin 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.

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?

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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???

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).5

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

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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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