Partnerships and networks in Africa

Léon Tshilolo, MD, PhDGG2020 /HVP6 Paris, UNESCO, 30-31 May 2016

What about REDAC?

• Willing of reducing the suffering, exclusion, morbidity and mortality in SCA patients

• Date and place of birth: May 2010, Kinshasa

Redac countries• Gabon• Cameroon• Tanzania• Centre Africa Republic• Republic of Congo• Angola• Zambia• Uganda• Kenya• Burundi• Rwanda• Sudan• DR Congo

Redac Policy and perspectives• Unity in the diversity• Actions > good intentions• Promotion of national networks or consortiums• Open to other partners:

– Sickle Charta– SCDIOPartenership North South – Global network– Reach– CADRE

Statute of the REDAC

Mission and social object

Members of the REDAC

Representative members of Redac countries

Human resources

• Academics• Practitioners • Nurses• Informatics and Statisticians• Administrative workers• SCD Associations

Kinds of available services

• Newborn Screening– Gabon – Cameroon - DR Congo– Angola – Kenya – Uganda, R Congo

• Transcutaneous oxymetry

• Trans Cranial Doppler • Cardiac echo-doppler : Tricuspidic reflux

(PAH)LT CEFA/CH MONKOLE 09

• Pulmonar Respiratory Fonctions (Spirometry)

• CT-Scan

• MR Imaging

• Laboratory: IEF, HPLC, Capillary Elect, Biochemistry, Haematology, etc

TOOLS of INVESTIGATION

Therapeutical Approaches

• Morphin : not so available (international legislation), fear of this use…

• Oral Penicillin: where newborn screening is available.• Folic Acid supplementation• Immunization: high cost, not sytematic

- Heamophilus- 23 valent vaccin (Pneumo)- 13 valent Prevnar(available since 2011)

Chronic blood transfusion program

Limitations of Chronic transfusion program

Blood transmitted diseases: HIV, CHV, BHV, malaria,

Blood donors policy

Allo-immunisations

Perspective of Chronic Blood Tranfusion

• To introduce a more large blood group typing

• To identify some selected donors ( blood adoption)

• To reduce the immune reactions (auto and allo)

• To introduce the apheresis system

• To provide iron chelation therapy

Access to Hydroxyurea treatment

Indications: Severe form of SCD

Limited access : High cost!

REACH study: children<10 yrsAngolaDRCKenya Uganda

Limiting factors in SS countries

• Lack of comprehensive SCD program

• Lack of well trained health workers

• Insufficient good and appropriate equipments

• Very few networks and partenerships

OTHER NETWORKS or GROUPS

Participation in multicentric studies and Projects

• REACH

• CP Drepano

• CADRE

• Others

Angola,Kenya,Uganda

DR Congoand USA

Hydroxyurea in children 1-10 yrs

Data base on line : Redcap

CADRE Research

Program of SCD management in Africa and Madagascar/ AFD funds

Sickle CHARTA• Sickle CHARTA is a Consortium for Health,

Advocacy, Research and Training in Africa for Sickle Cell Disease (SCD).

• The consortium is set up to bring together academicians, researchers, healthcare providers and interested individuals to promote, strengthen and develop health, advocacy, research and training in sickle cell disease in Africa.

REDAOWest Africa SCD network

• Abudja 2015

• Need help to federate the English and French speaking countries

Global network of SCD

What we need and what we can do?

• Educational and training program

• Accessible and adapted tools– Urban areas – Rural areas

• Data base collection and National or Regional Registrer

• A good and complete phenotyping: to write the natural history of SCD in Africa

The need of a Regional Collaboration and North-South parternership

Thank you/ Merci

Dank U/Aksanti