Voices of NCD Poverty Advocacy Fellow Leads Workshop on Understanding Global Burden of Sickle Cell Disease

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. Participants discussed the potential of the PEN-Plus model as a solution to provide equitable access to integrated chronic care services for SCD and other severe NCDs in poor, rural areas. The webinar came on the heels of the 72nd Session of the WHO Regional Committee for Africa, at which WHO AFRO’s 47 Member States voted to adopt PEN-Plus – A Regional Strategy to Address Severe NCDs at First-Level Referral Health Facilities, with the ambitious goal of having 70 percent of Member States rolling out PEN-Plus services to district hospitals by the year 2030.

The webinar was organized and led by Voices of NCDI Poverty Advocacy Fellow Eunice Owino, an advocate and person living with sickle cell disease from Kenya. Invited speakers included Eve Chibwe, Technical Assistant to the Malawi Ministry of Health; Daima Bukini, Lead for Advocacy and Community Engagement at SickleInAfrica; Prof. Constance Tenge, Pediatrician and Senior Lecturer at Moi University; and Lea Kilenga Masamo, Founder of Africa Sickle Cell Organization and global NCD advocate.

The event featured a roundtable discussion on the lived experiences of people living with sickle cell disease as well as a Q&A session. Roundtable participants included Zakareya Al Kadhem, Chair of Bahrain Sickle Cell Society; Arafa Salim, Founder of Sickle Cell Disease Patients Community of Tanzania Dar es Salaam and Community Advocate; and Eddie Resphanto, Ambassador International Coordinator, African Congress on Sickle Cell Disease (ACSCD). 

Life changed for me when I went through a support group that showed me how it’s important to meet those in the same space. Sharing and giving each other hope while trying to find what works for all was the beginning of my advocacy journey for people living with NCDs.

I hope to bridge the gap between and help change the narrative for people living with NCDs.

-Eunice Owino, Voices of NCDI Poverty Advocacy Fellow and Sickle Cell Warrior

Participants were encouraged to contribute to the discussion by sharing personal experiences in breakout sessions that focused on challenges they face as PLWSCD; what is needed to improve SCD case management for communities affected by the disease; and discussion of how the PEN-Plus model can make integrated, high-quality care for SCD, type 1 diabetes, rheumatic heart disease, and other severe NCDs accessible and affordable at district hospitals in poor, rural areas.