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

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