Sickle Cell Disease

Equitable Care for People Living with Sickle Cell Disease: The PEN-Plus Model

Every day in Africa as many as one thousand children are born with sickle cell disease. Without access to treatment, half of them will die before their fifth birthday. This tragedy is as medically unnecessary as it is morally unconscionable.

To address this gap in care, the NCDI Poverty Network is working with 22 resource-poor countries around the world to implement PEN-Plus, a proven integrated-care delivery model for severe, chronic noncommunicable diseases such as sickle cell disease, type 1 diabetes, and childhood heart diseases. For those with sickle cell disease, for example, PEN-Plus clinics provide specialized care close to home; hydroxyurea, a medicine that makes red-blood cells less likely to sickle; and money for food and transportation.

“When my children are sick, there is nothing I can do but stay home and care for them. If they are sick and I cannot work, I can hardly find food for us. I am so thankful for the help we receive. PEN-Plus helps so much, especially with medicine and financial support. Without this treatment, I don’t think my children would be alive now.”

- Zoine Chiwaula, mother of Loyida and Fortune, both young teens living with sickle cell disease in Malawi

Meet Loyida and Fortune, siblings living with sickle cell disease in rural Malawi

Sickle Cell Disease Updates

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Undaunted Spirit Despite Dual Diagnoses

“Tawonashe is exactly the kind of patient for whom PEN-Plus was designed,” said Dr. Alvern Mutengerere, project manager for noncommunicable diseases at SolidarMed, the implementing partner for the PEN-Plus clinic in Masvingo.

From Patient to Advocate: “Sickle Cell Warrior” Eunice Owino’s Story
From Patient to Advocate: “Sickle Cell Warrior” Eunice Owino’s Story

“We’re called sickle cell warriors because we’re fighters. Even though we experience excruciating bouts of pain, we can overcome.”

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

Network Promotes PEN-Plus at 4th Global Congress on Sickle Cell Disease
Network Promotes PEN-Plus at 4th Global Congress on Sickle Cell Disease

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 (SCD).