Eunice Owino
Sickle Cell Warrior from Kenya
Eunice Owino, a person living with sickle cell disease in Kenya, is also a sickle cell disease advocate and the founder of the Sickle Cell Uhuru Trust, an organization working to build awareness about sickle cell disease, to teach management of the disease, and to emphasize the importance of care for people living with sickle cell disease in Kenya and around the world.
Owino’s work as an NCDI Poverty Advocacy Fellow focused on building awareness of sickle cell disease in Kenya and other areas of the world where the disease is prevalent. She was one the first eight advocates to join the NCDI Poverty Network’s Voices for PEN-Plus program, which launched in September 2023.
Owino is the regional coordinator for the African Congress on Sickle Cell Disease and serves on the Board of Directors for the Sickle Cell Federation of Kenya. She also represents Kenya in the East Africa Sickle Cell Alliance.
Stories with Eunice Owino
During the East Africa Blood Disorders Leadership Forum, held in Nairobi in late October, Eunice Owino, a Voices for PEN-Plus advocate, spoke about her experiences living with sickle cell disease.
At the first International Conference on PEN-Plus in Africa, the science was serious and the messages meaningful. NCDI Poverty Network participants showed their passion and compassion throughout the conference—and even shared moments of levity.
Following the International Conference on PEN-Plus in Africa, the NCDI Poverty Network hosted the first Voices for PEN-Plus Advocacy Summit. The event, held in Dar es Salaam, Tanzania, on April 26, brought stakeholders together to brainstorm ideas for increasing the scope and effectiveness of advocacy initiatives.
In addition to participating in the first International Conference on PEN-Plus in Africa, NCDI Poverty Network members took several occasions to gather, reflect, and renew their commitment to ensuring that lifesaving treatment reaches those who need it most.
“People living with chronic conditions have historically not been considered important decision-makers from a policy perspective,” said Dr. Apoorva Gomber, coauthor of an opinion piece recently published in PLOS Global Public Health.
“We know what is best for us,” said Anu Gomanju, a person living with rheumatic heart disease in Nepal. “That’s why our needs and voices need to be prioritized.”
Gomanju made that statement in late September, during the online launch event for Voices for PEN-Plus. Sponsored by the NCDI Poverty Network, Voices for PEN-Plus brings together people living with severe, chronic, noncommunicable conditions to advocate for PEN-Plus implementation in sub-Saharan Africa and South Asia.
The Kenya Ministry of Health, the county government of Vihiga, and NCD Alliance Kenya hosted a celebration of the launch of PEN-Plus in Kenya on June 19.
“We’re called sickle cell warriors because we’re fighters,” says Eunice Owino, a sickle cell warrior from Kenya. “Even though we experience excruciating bouts of pain, we can overcome.”
More than 60 clinical experts, civil society members, people living with sickle cell disease (SCD), and NCD advocates from around the world came together on 25 August 2022 to discuss the burden and barriers of accessing care delivery for SCD in rural areas.
A team that included NCDI Poverty Network Co-Chair Dr. Gene Bukhman, Voices Advocacy Fellow Eunice Owino, and Advocacy & Training Associate Lauren Brown traveled to Paris in June to represent the Network and promote PEN-Plus at the 4th Global Congress on Sickle Cell Disease.