Africa Sickle Cell Organization

Our Goal

Build a movement of empowered people living with sickle cell across Kenya and Africa.

Our Vision

A world free from sickle cell suffering no matter where you live.

Our Mission

To continually improve the quality of life of people with sickle cell disease (SCD) by promoting access to quality and equitable care to rural resource poor communities.

Our Team

Click here to view our team

Who We are

Our story

Africa Sickle Cell Organization (ASCO) is a grassroots non-profit that operates in Taita-Taveta County. We aim to reduce sickle cell suffering for people living with sickle cell to achieve their fullest potential. ASCO accomplishes this by increasing access to equitable care through advocacy, action and strategic partnerships that address people, systems and policies.

In 2017, Lea initiated Africa sickle cell organization to redefine Sickle Cell response in Kenya. Inspired by stories of patients like herself from the six counties she ventured, she wondered why not use their stories to inform policies and health systems closest to them? We found that SCD patients, caregivers and communities bear the biggest burden of the disease and putting them at the center could improve their health outcomes and impact the SCD response. By building SCD response around their needs and priorities, these patients could be the keystone to ensuring access to equitable care locally.

Over the years ASCO has transformed into a patient led, patient centered organization championing and advocating for access and health for all, leaving no Sickle Cell patient behind.

Today, we are not just patients, we are advocates and social justice warriors who firmly believe in life free from sickle cell suffering.

10003 Warrior Project

The Forgotten Face Of An Inadequate Health System

Click to view 10003 Warrior Project Photos

Presented at the Fifth Global Symposium on Health Systems Research (HSR2018) held in Liverpool, UK. Part of the Photo Voice exhibition at the Museum of Liverpool

Due to lack of data, resources and the resulting under-prioritization of Sickle Cell in Kenya, we carried out an informal, unprecedented photo documentary of people living with Sickle Cell.

A total of 400 monochrome portraits and oral narrative experiences were taken and recorded from people from remote Sickle Cell prevalent communities in Kenya. These communities being Taveta, Mumias, Busia; are known Malaria endemic areas.

70% of those photographed were aged 12 or less
5% had access to sickle cell care
100% of the patients lacked basic health insurance
50% lacked access to pain management

The findings indicated the massive gaps in health systems around sickle cell and the patient burden due to these gaps.

This initiative led to development of :-

- National Guidelines for Management and Control of Sickle Cell Disease in Kenya in 2015

- Africa Sickle Cell Organization in 2018

Lea at the 10003 Warrior Project Photovoice Exhibition, Liverpool 2018

Kentice Tikolo

Kentice Tikolo has over 20 years’ experience in Strategic Public Relations & Communication Management, having grown through the ranks to Head of Corporate Communications for the Kenya Wildlife Service. This is in addition to 10 years progressive research, administrative and management experience in various multi-cultural settings. Currently chairman of the Football Federation of Kenya’s Electoral Board, she is a former Chairman of the Public Relations Society of Kenya (PRSK), and Africa’s delegate-at-large on the board of the Global Alliance for PR & Communication Management. Passionate about social causes, Kentice conceptualised and implemented Beyond Zero and the First Lady’s Half Marathon in 2014. She has since developed several initiatives as the Managing Director and Founder of Cause Impact (previously Impact Africa) Limited - a strategic PR & Communication Management company. Besides leading development of various research-informed communication strategies, she has supported various social impact initiatives such as development of Kenya’s Highway Code, New Drivers’ Curriculum and Handbooks – for the National Transport Safety Authority; Management of Aflatoxin, for the International Institute of Tropical Agriculture (IITA); the first AGRF in Arusha; Integrated Coastal Zone Management (ICZM), among several others. She has facilitated communication training for various organisations, including International Development Research Centre (IDRC), International Cancer Institute (ICI), UNICEF, UNDP, and the Westminster Foundation for Democracy (WFD), among others.

Kentice has been conferred the Order of the Grand Warrior (OGW) recognition, Golden Honours PRSK Award for excellence, a silver medal from the Government of Ethiopia for her role as the coordinator in ensuring the success of ICASA conference in 2011, and a PRSK award for the best not-for-profit campaign - Kenya’s First Lady’s Half Marathon and Beyond Zero. She teaches strategic communication at the University of Nairobi, where she is currently pursuing a PhD in Climate Change & Adaptation (Policy and Communication).

Martin Tairo

Martin is an Architect and Certified Public Accountant of Kenya. Principal partner at Architecture Kenya Design Workshop, a boutique architectural design consultancy with a wide range of projects mainly in residential and hospitality sectors. He teaches at the Technical University of Kenya, Department of Architecture and Environmental Design.

He is a Council Member of the Architectural Association of Kenya and East Africa Institute of Architects. He is the former Chairman of The Municipality of Mwatate.

Lea Kilenga

Lea Kilenga is a patient advocate living with Sickle Cell anemia. She has 9 years professional experience in patient centered global health advocacy for Sickle Cell and NCDs. She advocates and informs health systems, policy and research that involves affected, vulnerable communities. Lea is Founder & CEO of Africa Sickle Cell Organization, which through advocacy, action and strategic partnerships, ensures accesaaaas to equitable care for Sickle Cell for rural, resource poor communities.

She has a MSc in Global Health Delivery from University of Global Health Equity. As global health leader, Lea affirms Health is a human right. She advocates the need for biosocial approach for global heath by addressing social determinants and health inequities to enable patients, their families, and communities to achieve their fullest potential.

She has spoken on the biggest global stages across the world on meaningful involvement of people living with NCDs in the global response for NCDs. She has received multiple awards and recognition including H.E. Uhuru Kenyatta “Heroes Award” for her work in Sickle Cell in Kenya. She sits at the Our Views, Our Voices initiative for meaningful involvement of PLWNCDs Advisory Committee at NCD Alliance, McKinsey & Company Next Generational Women leaders, One Young World Champion. She co-chairs the NCD technical Working group in Taita-Taveta County and is the secretary of the NCD Intersectoral Coordinating Committee Hematological Disorders Technical Working Group.

Health System Response Technical working group; Taita Taveta

Dr Timothy Mbale – Med sup Taveta sub-county hospital
Madam Thumbi – Nurse Manager Taveta sub-county hospital
Dr Richard Wangai – Taveta sub-county pharmacist
Thomas Walongo – Taveta lab technician
Eunice Masamo – ASCO representative
Constance Lezen – Deputy Nurse manager Taveta sub-county hospital
Dr Daniel Kamande – Taita-Taveta County Pharmacist
Flora Shambi – Community Health strategist Taveta sub-county
Muriel Nyagaka – Oncology and Hematology county clinical officer
Bernard Rukwaro – Sickle Cell clinical officer Taveta sub-county

Patient working group

Albert Loghwaru
Ruth Chipa
Athman Juma
Thomas Walongo
Dorah Karia
Mary Naya
Cecilia Leyo
Getrude Kalondu
Rebecca Lumumba