Uganda: UAPO

Organisation's profile 

UAPO is a patient-driven not-for-profit civil society organization founded in 2011. UAPO leads the patients voice through membership,collaboration and partnerships with other patient and advocacy organizations; healthcare professionals, private sector entities,pharmaceutical industry; regulatory authorities, policy makers, NGOs, academics,researchers, consumer organizations; patient advocacy groups; and other individuals. We engage in health policy, research & health technology, and emerging issues relevant to UAPO members. Our strategic relations help us to strengthen the evidence base and sustainable interventions for high quality healthcare.

 

Vision: “Patients at the center of healthcare, research, and development”

Mission: “Facilitating an environment where patients are empowered to actively engage with health-care providers, policy makers,and researchers to improve access to and the quality of health services”

 

Objectives:

1. Support Patients with chronic diseases and lifelong conditions have access to quality patient centered health-care services
2. Empower patients and advocate with a strong patient’s voice on relevant aspects of health care policy to influence healthcare agenda
3. Promote health literacy on safe medicines/use of safe medicines for quality improvement in health care service delivery system
4. Stimulate and promote patient centered research and clinical trials including to receive timely access to new treatments
5. Improve patient-provider relationships & Increase access to patient information to promote and protect their rights

 

Summary of Sarcoma Cancer situation:Accurate estimation of the burden of cancer in developing countries is a major public health concern for cancer prevention and control because of the limited coverage of population-based cancer registries (PBCRs). In Uganda, 34,008 new cancer cases were registered and 22,992 deaths occurred in 2020,representing approximately 5 million people (11.9%) of the 42 million Ugandans .The five common cancers in Uganda are cervix, Kaposi sarcoma (KS), Breast, prostate and non-Hodgkin’s lymphoma. Sarcoma is a common cancer in Uganda, particularly among males in the context of the HIV/AIDS epidemic.  sarcoma is a significant cancer concern, with the highest incidence among males in the 20-39 year age group. In Uganda, common types of sarcomas include fibrosarcoma, rhabdomyosarcoma, synovial sarcoma, liposarcoma, and leiomyosarcoma, with fibrosarcoma being the most prevalent.

Sarcoma Prevalence: Approximately 13,130 new cases (0.7% of all new cancer cases) and 5,350 deaths (0.9% of all cancer deaths) were reported in 2020, with a 5-year survival rate of 64.7%. Men have a slightly higher risk of soft-tissue sarcoma than women.

The Role of Patient Support Groups and Organizations in Cancer Care in Uganda.

Uganda Alliance of Patients Organization (UAPO) plays a critical role in bringing patient support groups to speak with one voice while promoting access to quality and equitable healthcare services in Uganda. Patient support and advocacy groups have played a key role in improving patient awareness and safety, and have helped lobby government for improved health systems in Uganda. Examples of such advocacy groups coordinated under UAPO, include Bladder Cancer Advocacy Network, the Prostate Cancer Foundation, Uganda Women Cancer Support Organization, and the Kidney Cancer Association; are powerful allies of Uganda Alliance of Patients’ organization. Together with these allies, UAPO focuses more on capacity building for healthcare teams, advocacy, research and patient empowerment. Our experience indicates that It is only with patient engagement at all levels of healthcare decision-making that healthcare systems can be designed and delivered to meet the needs of patients

 

Our Programs:

UAPO’s Programs are informed by The National Cancer Control Plan which is a crucial tool for bridging gaps in cancer control in Uganda. It provides a comprehensive framework for implementing cost-effective and evidence-based cancer control interventions across the cancer control continuum. The NCCP's holistic approach encompasses prevention, early detection, diagnosis, treatment, palliative care, and survivorship, addressing the entire spectrum of cancer care. By integrating cancer services into the broader health system, the NCCP ensures that cancer care is accessible, equitable, and of high quality, especially in underserved and rural areas.UAPO Programs focus on; Promotion of chronic disease prevention, early diagnosis and linkage to care; health literacy; patient safety; social support; health technology and advocates for access to affordability and availability of quality medicines & products. UAPO focuses primarily on the patients’ experiences of healthcare, policy, research & development while building alliances with other actors to ensure that all core issues in a patient’s life are addressed effectively to achieve patient centred Universal Health Coverage (UHC).  While there isn't a specific, dedicated sarcoma policy or research framework, the Uganda Cancer Institute (UCI) plays a crucial role in providing policy direction, care, research, and training for cancer services, including sarcomas. The UCI, along with regional cancer centers and patient organizations, aim to improve cancer outcomes through research, accessible services, and collaborations.

 

Capacity Building:UAPO conducts a needs assessment for its member organizations regarding program development through surveys on membership subscription and visit to facilities and/or project areas of its members.UAPO also conducts capacity building training for its members especially on government regulatory compliance, project development and joint funding proposal writing. To strengthen her capacity to lead and champion advocacy, awareness creation and other activities for cancer control,UAPO focuses on; internal capacity building for its team members and the secretariat, as well as external capacity building focused on member organizations and patient support groups.

Advocacy and policy:Given the growing burden of cancer in Uganda with existing gaps in cancer control including limited government prioritization and inadequate financing, UAPO influences decision making through advocacy for effective cancer control. Uganda being a poor country, there is a lot of competition amongst sectors for limited resources and government must make choices based on the levels of urgency and priority. UAPO is committed to ensuring that the following outcomes are realized;

• Budget allocation prioritizing cancer control activities
• Adoption of the national cancer control policy frameworks
• Establishment of national cancer registry
• Establishment of regional cancer centers
• Relevant/ specialist human resource
• Regulatory harmonization to create adequate conditions for access to safe and quality assured medical care including the African Medicine Agency actualization.
• Advocacy work on Pharmacovigilance and patient safety;

1.Through health literacy programs, our team members search for basic information about patients and the safety issues to be addressed

2.We Influence change of attitudes of front-line healthcare providers for a positive safety climate

3.We work with Patients’ families and carers to increase awareness on safety and quality of care for patients

4.We disseminate and carry out Knowledge Translation/Mobilization with scientific research institutions

 

UAPO leads patients groups and  partners with other organizations such Uganda Cancer Society in collaborative evidence based advocacy to ensure that government fulfills its political commitments for cancer control. The majority of the patients groups’ clearly agree that fronting a one strong voice is needed to engage and influence government to increase prioritization on cancer control activities in the country.

 

Research:

In its research work, UAPO seeks to build partnerships with relevant actors including government, civil society and academia in order to conduct research to inform Patient groups programs. UAPO acknowledges that information is a resource without which it becomes challenging to make meaningful Advocacy and capacity building. Part of the reason why there is limited advocacy around sarcoma cancer is the fact that there are minimal facts providing justification for a given course of action. However, not much epidemiological research has been done (causes, patterns and distribution of disease) to ascertain the incidence and prevalence as well as the health related costs of sarcoma cancer in Uganda. Such information is vital for policy makers to justify prioritization and resource allocation for sarcoma cancer. Therefore, UAPO intends to design and implement a research program with a strong focus on epidemiological studies in order to generate sarcoma evidence.

 

Patient Empowerment and Awareness Creation:UAPO conducts regular updates to the media on issues relating to cancer – through newspaper, press releases, radio and television where possible.UAPO also coordinates outreach campaigns for  member organizations and patient support groups at the national, sub national and at the lower local government level. This is through cancer camps, cancer exhibitions, community awareness raising sessions, ensuring visibility of cancer as a major burden to Uganda’s economy. UAPO does design awareness campaigns to guide member organizations in implementing nationwide awareness with appropriate strategies/approaches that involve government, civil society and the general public. UAPO’s approach brings on board political leaders at the highest level, religious leaders, traditional leaders and celebrities with a good reputation. The organization and her members seek to target dispelling myths and misconceptions around cancer in the communities.

 

Patient Support: UAPO has within its membership patient groups  that are running cancer patient hostel services. These provide accommodation, meals, psychosocial support, transport and basic first aid services among others. In a bid to sustain their operations, UAPO jointly mobilize resources for the respective patient support areas e.g. counseling, palliative care, accommodation and transport. Additionally, UAPO provides leadership and participates in developing policies and/ or guidelines to improve patient support and care provided by member organizations. UAPO also participates in monitoring implementation of a cancer survivors’ support program by member organizations to help cancer survivors meaningfully reintegrate in to the community and be productive.

 

Challenges:

• Drug stock outs at facilities where patients have been referred.
• Ineffective implementation of public health policies on the side of government/low financing anfd commitment
• Social stigma among most patients - due to the nature of their disease/condition

 

Way Forward-Ongoing steps:

• Together with stakeholders, UAPO has adopted a cancer policy brief - National Cancer Control Plan to reduce cancer risk, sickness, and death in the country.The purpose of this policy brief is to advocate for the urgent adoption and implementation of the NCCP in Uganda. It aims to: a) Highlight the Need: Emphasize the critical gaps and challenges currently hindering effective cancer control in Uganda, such as the shortage of oncologists, inadequate screening and treatment equipment, limited cancer services in rural areas, and low levels of cancer awareness. b)Facilitate Policy and Advocacy: Serves as a tool for policy advocacy to ensure adequate resources, political will, and strategic partnerships are mobilized to support the NCCP, ultimately aiming to reduce cancer-related morbidity and mortality in Uganda..
• Budget Advocacy: Patient Organizations are playing a crucial role in advocating for adequate resource allocation to support cancer control interventions. By engaging in persistent budget advocacy, highlighting the discrepancies between approved budgets and actual expenditures, ensuring that sufficient funding is allocated for medical supplies, advanced diagnostic equipment, and treatment facilities.
• Enhancing Cancer Education and Awareness: UAPO and its membership are raising awareness and educating general population about cancer prevention, early detection, and treatment options by Implementing targeted education campaigns to dispel myths and misconceptions about cancer, promoting healthier lifestyles and encouraging regular screenings. We Utilize various media platforms and community outreach programs to amplify the impact of these educational efforts, leading to increased cancer awareness and proactive health-seeking behavior.
• UAPO is working to Strengthen Patient group alliances to demand for service delivery and accountability
• Patient empowerment Campaign- UAPO is carrying Out Education for patients to make informed decisions about their health;health literacy,patient centered research,patient and customer education,patient information,use involvement,information creation,healthcare investigations,patients safety recommendations,medical errors,legislation/health policy,fight the substandard or counterfeit medicines
• UAPO is implementing operational Research about Inadequacies in service delivery to influence bridging gaps in patient safety and quality of health care
• Patients groups are emphasizing the need for the establishment and support of additional regional PBCRs and periodic population-based cancer surveys to accurately determine the burden of cancer,including sarcoma.