Case studies on Meaningful Involvement of People Living with NCDs in Decision Making Process

The EADSG Congress 2023 introduces the Ilondo Mapoko Achievers awards for young scientists in diabetes and other NCDs Over 300 delegates from Sub Saharan Africa convened at white Sands Hotel, in Dar es Salaam-Tanzania for the 6^th East Africa Diabetes Study Group Congress and Scientific Sessions.  The three days congress (26th-28^th April 2023) was a comprehensive, multidisciplinary forum with a stellar faculty of leaders in diabetes and other Non-Communicable Diseases that connect the scientific community and accelerate life science discovery to discuss ambitions, priorities and actions for change in diabetes and NCDs care within the East Africa Region. Focusing on the theme: Diabetes and Cardiovascular Disease, the EADSG Congress 2023  was organized by the East Africa Diabetes Study Group in partnership with the Ministry of Health in Tanzania, World Diabetes foundation, Micro Lab Ltd, Servier, Astrazeneca, Denk Pharma, Improving Lives, Curing Type 1 Diabetes ( JDRF), Embecta, Novo Nodisk and USV. The congress was preceded  three award lectures: Dr Erick Njumwa Mngola Memorial Lecture on Relevance of early diagnosis and management of Type 1 Diabetes in low and middle income countries; Prof Donald McLarty Memorial Lecture on Diabetes Phenotypes in low and middle income countries; Sir Albert Cook Memorial Lecture on Relevance of Diabetes Riskscore for early diagnosis in Low and Middle Income Countries presented by Dr. Warren Rhen Wei Lee, Prof Nihal Thomas; Prof Andre Pascal Kengne respectively. These were accompanied by a series of presentations and panel discussion geared towards promoting knowledge sharing and nurtured debate to align, accelerate, account, engage and invest in diabetes management and care; Data Management and improved technologies in management of diabetes, access and administration of insulin and other commodities for children with type 1 diabetes as well as translating diabetes research into effective practice. The opening ceremony was officiated by the Hon. Ummy Ally Mwalimu, Minister of Health, Community Development, Gender, seniors and Children – Tanzania. At the same function, the East Africa Diabetes Study Group (EADSG) Ilondo Mapokp Achievers Awards for Young Scientists were launched.  According to Prof. Silver Bahendeka, the Congress Chairperson, the Ilondo Mberenge Mapoko Achievers Award for young scientists is named in recognition of Dr. Ilondo Mbelenge Mapoko for his outstanding scientific work in metabolism and for his being a key stimulant for training of young scientists from the Africa Region. Dr. Ilondo Mbelenge Mapoko is a native of the East Africa Region. The awards have been prepared to encourage young persons in research in the world of NCDs specifically Diabetes and the  first round was presented to  Ms. Lauryn Nsenga from Uganda and  Dr. Emmanuel  Mbuki from Tanzania. The East African Diabetes Study Group (EADSG) was launched in 2011 to provide educational programs and conduct research to further expand our knowledge of this debilitating illness and its treatment. According to Prof. Kaushik Ramaiya the EADSG Secretary, the East African Diabetes Study Group has highlights the health care delivery in diabetes and other non-communicable diseases (NCDs) in the East Africa Region. It takes action to reduce the devastating complications of diabetes mellitus. Its plan of action emphasizes treating diabetes to reach and maintain target levels of glucose, blood pressure, and lipids.  “EADSG is committed to excellence in education, research, and treatment of diabetes. EADSG welcomes to all endocrinologists, diabetologists, primary care physicians, diabetes educators, and other health care professionals who work with diabetes patients with a nominal Membership Fee of USD 50 annually,” he noted.

In 2021, the Africa NCDs Network embarked on the journey of developing a strategic plan to guide its operations and support its major objective of advocating for NCD prevention and Control in Africa through universal health access, affordability and population-based risk factor mitigation. The ANN Strategic Plan is a five-year roadmap (2022-2026) for its advocacy activities and engagements with its member alliances, stakeholders, policymakers, government entities, partners, Civil Society Organizations and the NCD world. It delivers on key essential elements by attending closely to the gaps identified from environmental scanning, the Network’s operations and a mapping exercise conducted in 2020 as part of understanding the CSOs environment vis-à-vis NCDs in Africa. The framework is hinged on the Network’s strategic directions of Capacity Development, Quality Research, Policy Engagement, Affordable Access, and People Power. Each pillar represents the ANN’s approach to solving the specific gaps identified and the critical need to meaningfully engage and involve people with lived experience.  The Five pillars highlight both internal and external opportunities for the NCD Community in Africa; define its objectives to be pursued as well as the Key Performing Indicators for the needs ahead. There are six critical objectives that ANN will focus on in the next five years, and these include;

1. Developing the capacity of National Alliances to be relevant in the sub-regional and national discourse on NCDs
2. Ensuring high-quality and relevant evidence-based action and reporting on NCDs
3. Ensuring Policy engagement with development partners, governments and African governmental bodies
4. Increasing universal, equitable and affordable access to quality and affordable treatment and care including technologies for NCDs in Africa
5. Promoting adequate financing for the NCD response in Africa
6. Ensuring Institutional development and formalized mechanisms for meaningful involvement of people living with non-communicable diseases and other vulnerable populations

At the ANN, we believe that a new paradigm should prevail as we seek to provide a strategic position for Africa to respond to its double burden of NCDs as part sustainable development agenda of reducing avoidable sicknesses and deaths from chronic diseases and mental health conditions by 2030.   Our theory of change engenders knowledge creation, building national alliances towards stronger national-level advocacy, promoting NCD-friendly policies and enhancing multisectoral collaboration. Funding Since its inception, the Africa NCDs Network has majorly relied on NCD Alliance as its major funder. This initial support has enabled the proper establishment of the Network with a professional and diverse Board; working towards a physically well-established Secretariat, as well as developing its institutional policies and operational processes. In collaboration with its partners, the ANN will continue to diversify its collaborations in order to suitably achieve these objectives.   As we move into a policy-focused and research-centered entity, join the ANN as a full member,  Associate member or partner by visiting www.africancds.org to know more about the ANN and its work.

In a bid to become a policy focused and research centered entity, the Africa NCDs Network has initiated a physical secretariat in Cameroon. The secretariat serves as the central administrative unit for the network, providing programmatic and operational support to the ANN members, partners as well as the wider NCD community. It is also responsible for coordinating the day-to-day activities of the organization, manage systems that support the Network’s objectives and agenda and also plans and implements projects and programs on behalf of ANN and its partners  Since its inception in 2020, the Africa NCDs Network has been managed remotely by interim secretariat. The team has been built on the pillar of voluntarism with representation from the four Regional Alliances (South, West, East and Central) and Ghana NCD Alliance being the fiscal partner.  With the completion and adoption of the Constitution and with the support from the NCD Alliance SEED grant, the ANN leadership found it expedient to formally set up a physical office. Through a rigorous vetting process, the Cameroon NCD Alliance was finally selected to host the first physical secretariat for the Africa NCDs Network.

Through a collaborative approach the Africa NCDs Network (ANN) is striving to ensure that People with lived experiences on NCDs are meaningfully involved and engaged as key stakeholders in advocacy and decision- making processes on NCD prevention and control in Africa and beyond. The Network in partnership with Global NCD Alliance (NCDA) has developed the Africa Regional Advocacy Agenda of people living with NCDs.   The Africa Regional Advocacy Agenda of people living with NCDs draws on the power of lived experiences and highlights the needs, concerns, challenges, and priorities of African people living with NCDs. The agenda also discusses the true meaning of meaningful engagement to all stakeholders intervening on key issues relating to NCDs taking a keen consideration of a people centered approach. The agenda was composed by 238 people living with NCDs from the eight (8) countries (Malawi, Eswatini, Ethiopia, Ghana, Cameroon, Nigeria, South Africa and Kenya), benching on the Our Views, Our Voices initiative to promote the meaningful involvement of people living with NCDs in Africa in the NCD response. The purpose of the Africa Regional Advocacy Agenda of people living with NCDs is to crystallize and document ‘calls to action’ of people living with NCDs, provide a compass for NCD national and regional advocacy efforts, guide African governments and key stakeholders to strengthen NCD advocacy through prevention and control responses, meet agreed global and national NCD commitments and targets, and reframe the NCD narrative in a manner that puts people at the center of all. It is wholly owned by and represents the needs and demands of the people living with NCDs in Africa. It is also intended to guide and support efforts of key stakeholders to improve NCD prevention and control. The agenda also serves to strengthen the NCD response not just at the regional level, but also at the community, national and global levels. It is a valuable reference for civil society and NCD Alliances in Africa, thus urging them to take action to meet the agreed upon global NCD targets, and to put people first! Nothing about us without us! As a tangible expression of people’s first-hand compelling lived experiences and concerns, the Africa Regional Advocacy Agenda of people living with NCDs offers great potential to be leveraged at the global, regional and national levels and can be adapted and used strategically in different settings. The agenda can also be aligned with broader advocacy priorities of national/regional NCD alliances and civil society organizations as they help to contextualize systemic challenges in real terms.