PEN-Plus Uganda: Advancing Integrated Care for Severe Chronic NCDs

Uganda continues to make significant progress in strengthening the delivery of care for severe, lifelong non-communicable diseases (NCDs) through the PEN-Plus program. Working closely with the Ministry of Health, district hospitals, and international partners, PEN-Plus Uganda is expanding access to high-quality services for conditions such as Sickle Cell Disease, Type 1 Diabetes, severe rheumatic and congenital heart diseases, chronic respiratory diseases, and advanced diabetes complications.

The program now benefits 2,734 patients, reflecting strong demand for decentralized, equitable care for serious chronic conditions. As services expand, PEN-Plus continues to demonstrate how integrated, nurse-led models can transform outcomes for patients who have historically faced limited access to specialized treatment.

Strengthening Clinical Care and Improving Patient Outcomes

Growing Access to Lifesaving Care

Between January and September 2025, PEN-Plus clinics enrolled 662 new patients, with Sickle Cell Disease representing the largest proportion of cases across both Atutur and Nakaseke hospitals. Sustained availability of essential medicines—particularly hydroxyurea for SCD and insulin for T1D—has ensured uninterrupted treatment, thanks to strong collaborations with partners and careful buffer stock management.

Early Diagnosis and Linkage to Care

Sickle Cell screening efforts continue to expand through national laboratory systems and point-of-care technologies. Linkage to care remains strong, especially at Atutur, where nearly all children who screened positive were promptly enrolled for treatment and follow-up.

Improving Patient Retention and Support Systems

Home visits, enhanced phone tracing, and peer support groups have strengthened continuity of care. This approach has sharply reduced loss-to-follow-up, enabled early identification of high-risk patients, and safeguarded adherence, particularly among children and adolescents with T1D.

Advanced Cardiac Care Through Regional Collaboration

To date, 40 cardiac patients have been referred for specialized evaluation at the Uganda Heart Institute, with 14 successful surgeries completed. Two complex cases were successfully managed through cross-border referral to Rwanda, demonstrating the value of regional collaboration for highly specialized care.

Building a Skilled Workforce Through Training and Mentorship

A core pillar of PEN-Plus Uganda is the development of Master Trainers and strengthened clinical teams capable of delivering high-quality, decentralized NCD care.

Mentorship efforts—both onsite and virtual—have improved provider competencies in:

  • advanced SCD management,
  • asthma and COPD care,
  • Type 1 Diabetes management,
  • echocardiography and cardiac evaluation, and
  • genetic counselling and chronic care education.

These capacity-building investments are positioning PEN-Plus sites to serve as regional training hubs, supporting the long-term sustainability and scale-up of the PEN-Plus model across the country

Driving National Policy and Scaling Up Integrated Chronic Care

Significant progress was recorded toward finalizing the National Operational Plan (NOP) for PEN-Plus. A joint workshop led by WHO, the Ministry of Health, Makerere University, and UINCD produced substantial advancements in costing, planning, and alignment with national systems. A second workshop scheduled for November will finalize outstanding components.

In parallel, efforts to integrate HIV and NCD services into a unified chronic care model continue, including work on harmonized monitoring tools and enhancements to the national electronic medical record (eAFYA).

Challenges and Ongoing Efforts

While progress is strong, several challenges require sustained attention:

  • Growing patient volumes amid limited staffing and infrastructure
  • Inadequate national supply of NCD medicines and diagnostics
  • Double data-entry burdens during EMR transition
  • Persistent gaps in retention and disease control, particularly in T1D
  • Redeployment of trained staff from key chronic care roles

The PEN-Plus team continues to address these issues through advocacy, reallocation of resources, workflow redesign, and strengthened collaboration with the Ministry of Health.

Looking Ahead: Priorities for the Coming Year

Over the next year, PEN-Plus Uganda will focus on:

  • Endline assessments of clinic functionality and service quality
  • Monitoring patient outcomes through retrospective reviews
  • Training, mentorship, and certification of healthcare providers and Master Trainers
  • Strengthening clinics as regional training hubs
  • Sustaining quality of care and documenting lessons to guide national scale-up

These efforts represent a crucial stage in maturing the program and ensuring long-term impact for patients with severe chronic NCDs.

Call to Action: Join Us in Transforming NCD Care in Uganda

PEN-Plus Uganda is demonstrating what is possible when strategic collaboration, local leadership, and global solidarity converge. Yet the need remains immense. Severe chronic NCDs disproportionately affect children and young adults, and thousands more could benefit from decentralized, high-quality care.

We call on partners, researchers, donors, and policymakers to join us in expanding the PEN-Plus model, strengthening chronic care systems, and ensuring that no patient—regardless of geography or income—is left behind.

To collaborate, support, or learn more about PEN-Plus Uganda, please contact UINCD or visit our offices and our X (@uincd) account for updates.

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