Introduction
Authors
John Vianney Amanya¹, Dr. Annet Naguudi², Ms. Gertrude Nakigudde³
¹, ² Uganda Alliance of Patients’ Organizations (UAPO), Uganda
³ Uganda Women’s Cancer Support Organization (UWOCASO)
Cancer is an increasingly significant public health challenge in Uganda, with substantial implications for patients, families, and the health system. According to the Global Cancer Observatory (GLOBOCAN) 2022 estimates, Uganda records approximately 35,968 new cancer cases and 24,629 cancer-related deaths annually, with an estimated 77,028 people living with cancer within a five-year prevalence period (Bray et al., 2024; World Health Organization [WHO], 2022). The most common cancers include cervical, breast, prostate, Kaposi sarcoma, and esophageal cancers, many of which are preventable or treatable when detected early.
Despite this growing burden, cancer outcomes in Uganda remain poor. Many patients present at advanced stages of disease, experience delays in diagnosis and referral, and face fragmented care pathways with limited access to treatment, psychosocial support, and survivorship services. These challenges are exacerbated by geographic inequities, health workforce constraints, and gaps in access to essential medicines.
Addressing these challenges requires patient-centered cancer care approaches that prioritize early detection, coordinated treatment, clear communication, and quality of life across the cancer continuum. Patient organizations, including the Uganda Alliance of Patients’ Organizations (UAPO) and the Uganda Women’s Cancer Support Organization (UWOCASO), play a vital role in strengthening cancer care through community engagement, advocacy, patient navigation, and supportive care interventions informed by lived experience.
Early Detection and Diagnosis
Late diagnosis remains one of the leading contributors to poor cancer outcomes in Uganda. Community-based interventions that promote awareness and strengthen referral pathways are essential to improving early detection.
Community awareness and education: UWOCASO’s breast cancer awareness initiatives, such as the Move for Her program, integrate physical activity, education, and screening outreach to increase awareness of breast cancer risk factors and early warning signs. These initiatives help address stigma, fear, and misinformation that commonly delay care-seeking behavior (Isabirye, 2025).
Patient navigation and referral: In collaboration with the Uganda Cancer Institute and the Ministry of Health, UWOCASO has supported patient navigation training for Village Health Teams (VHTs), cancer survivors, and health workers. This model has strengthened referral systems and improved continuity of care for women with suspected breast cancer (Union for International Cancer Control [UICC], 2025).
Integrated outreach services: Community outreach programs that combine health education with screening and referral services have been effective in linking individuals to diagnostic and treatment facilities, particularly in underserved areas (UWOCASO, n.d.). Evidence from both local and global contexts demonstrates that early detection and navigation interventions improve survival and reduce delays in care.
Access to Quality Cancer Care
Access to quality cancer care remains uneven across Uganda, with significant disparities between urban and rural populations.
Decentralization of services: Expanding regional oncology services, supported by effective referral systems and telemedicine, can improve access to care closer to patients’ homes and reduce the burden on national referral facilities.
Health workforce capacity building: Training healthcare workers in oncology care, referral protocols, and patient-centered communication is essential for improving diagnostic accuracy, treatment initiation, and continuity of care (WHO, 2016).
Access to essential medicines and technologies: Reliable availability of chemotherapeutic agents, hormonal therapies, diagnostics, and pain medicines remains critical to effective cancer treatment. Interruptions in access contribute to poor adherence and treatment outcomes.
Patients’ organizations support access to care by identifying barriers, promoting adherence, and facilitating communication between patients and providers.
Palliative Care and Survivorship
Comprehensive cancer care extends beyond treatment to include palliative care and survivorship support that address physical, emotional, social, and spiritual needs.
Psychosocial support: UWOCASO’s Mentally Cancer Free and Thriving home-visit initiative provides psychosocial and emotional support to cancer patients and survivors, addressing distress, trauma, and social isolation associated with cancer diagnosis and treatment (UWOCASO, 2024).
Peer support and survivorship networks: Survivor-led peer support groups offer safe spaces for shared experience, mutual encouragement, and information exchange, contributing to improved well-being and long-term engagement in care.
These approaches align with WHO recommendations for integrated, people-centered health services and underscore the importance of supportive care across the cancer continuum.
Community Engagement and Partnerships
Sustainable improvements in cancer care require strong partnerships across sectors.
Role of patient organizations: Patient organizations such as UAPO and UWOCASO enable meaningful patient participation in advocacy, research, and service design, ensuring that cancer care policies and programs reflect patient needs and priorities.
Multi-sectoral collaboration: Partnerships involving government institutions, healthcare providers, civil society organizations, researchers, media, and development partners strengthen prevention efforts, mobilize resources, and support accountability.
Scalable community-driven models: Initiatives such as patient navigation training and home-based psychosocial support demonstrate the potential of community-driven models to improve early diagnosis, continuity of care, and patient experience (UICC, 2025).
Conclusion and Recommendations
Improving cancer care and survivorship in Uganda requires a comprehensive, patient-centered approach that spans prevention, early detection, diagnosis, treatment, palliative care, and survivorship support. Patient organizations are essential contributors to these efforts, bridging gaps between communities and the health system and ensuring that care delivery responds to lived realities.
Key recommendations include:
- Scaling effective community-based interventions, including awareness, screening, and patient navigation programs
- Strengthening health system capacity, particularly in oncology training, referral systems, and decentralized service delivery
- Integrating psychosocial and survivorship care as core components of cancer services
- Promoting inclusive partnerships that engage patients, civil society, and policymakers in cancer care planning and implementation
By centering cancer care on patient needs and experiences, Uganda can improve outcomes, reduce inequities, and enhance quality of life for people affected by cancer.
References
- Bray, F., Laversanne, M., Sung, H., Ferlay, J., Siegel, R. L., Soerjomataram, I., & Jemal, A. (2024). Global cancer statistics 2022: GLOBOCAN estimates of incidence and mortality worldwide for 36 cancers in 185 countries. CA: A Cancer Journal for Clinicians, 74(3), 229–263.
- Isabirye, D. (2025, November 2). Move for Her: UWOCASO conducts successful breast cancer dance workout at Lugogo. Kawowo. https://kawowo.com/2025/11/03/move-for-her-uwocaso-conducts-successful-breast-cancer-dance-work-out-at-lugogo/
- Union for International Cancer Control. (2025). Improving early diagnosis in Uganda through training on patient navigation [Case study]. https://www.uicc.org/news-and-updates/case-studies/improving-early-diagnosis-uganda-through-training-patient-navigation
- Uganda Women’s Cancer Support Organization. (2024). Mentally Cancer Free and Thriving programme. https://uwocaso.org.ug/home-visit/
- Uganda Women’s Cancer Support Organization. (n.d.). Pink initiative. https://uwocaso.org.ug/pink-initiative/
- World Health Organization. (2016). Framework on integrated, people-centred health services. WHO.
- World Health Organization. (2022). Cancer country profile: Uganda. WHO.