On Wednesday June 2nd, 2021, stakeholders and advocates from across the NCDI Poverty Network gathered to formally welcome the first ever Voices of NCDI Poverty Network Advocacy Fellows at a virtual opening ceremony for the fellowship. Four advocates living with non-communicable disease and injuries (NCDIs) in NCDI Poverty Networks countries were chosen as members of the 2021-22 cohort.
The event introduced fellows to the work of the NCDI Poverty Network and Lancet NCDI Poverty Commissions and groups. Commissioners and advocates from Nepal, Mozambique, Kenya, Malawi, and others shared insights with the fellows on leadership and advocacy, and the importance of lived experience voices in taking the agenda forward. Fellows also had a chance to share their stories and discussed what they are excited to focus on in the coming months.
The fellowship is set to run from June 2021 through December 2022. The fellows will be working together across disease-specific issues and regions to co-develop and implement advocacy projects and strategy, in close collaboration with the larger NCDI Poverty Network. Fellows will participate on the Steering Committee of the NCDI Poverty Network, as well as be provided individual mentorship and peer-to-peer support. Training sessions on a number of related topics will be regularly provided through monthly workshop sessions, and fellows will receive individual mentorship through the co-secretariat team and the wider community. Fellows will also be provided regular opportunities to network and meet with prominent advocates, implementers, and researchers and have opportunities to represent the NCDI Poverty Network in speaking engagements or other conferences and events.
Meet the 2021-22 Fellowship Cohort:
Anu Gomanju, Nepal: Anu Gomanju is a registered public health professional, currently pursuing a Master of Public Health in Global Health program of Thammasat University-Thailand with a thesis in progress in Nepal on Safe Motherhood. She has previously achieved a Master’s in Sociology and a Bachelor’s in Public Health from Universities of Nepal. She is very pleased to have an opportunity to be involved in Mental Health advocacy and to contribute to the promotion of health and nutrition in relation to non-communicable diseases (NCDs) and injury advocacy. When Anu was 11 years old, she was diagnosed with Rheumatic Heart Disease (RHD) and since that period she has been under medication, enduring a life-threatening health condition and two open-heart surgeries. With her experiences living with this condition, she knows how poverty and NCDs can affect every facet of one’s life as well as the lives of their loved ones. Therefore, she is interested as well as excited to advocate for people living in settings of poverty in preventing their lives from morbidity and mortality caused by preventable NCDs and injuries and to promote their health and prolong their lives.
Eunice Owino, Kenya: Eunice Owino is a Sickle Cell Disease (SCD) advocate and the Founder and Executive Director of the Sickle Cell Uhuru Trust (SCUT), an organization working to create awareness about Sickle Cell Disease and emphasis on the importance of care for persons living with Sickle Cell Disease in Kenya and around the world. Eunice is a sickle cell warrior (a person living with sickle cell disease). She was diagnosed with the condition at eight months. Her family has been her greatest support system growing up and this enables her to endure the pain and struggles of living with sickle cell disease. She has been able to manage sickle cell conditions very well and lead a normal life. She delights in advocating for Persons Living with Sickle Cell Disease and as such, she’s represented the plight of SCD patients on various platforms including; conferences in Africa and California, documentaries, and media interviews across the globe.Moses Echodu, Uganda: Moses Echodu is a childhood cancer survivor and currently volunteering with Uganda Child Cancer Foundation as the Program Director. As a child, he suffered from Burkitt’s Lymphoma. Moses graduated from Makerere University with a Bachelor’s Degree honors in Information Technology. He has spent his last 7 years involved in Cancer Awareness among young people, advocacy, and leadership. Currently, he is actively engaged in creating cancer awareness and advocating for policies to improve access to cancer services for young people. This has been achieved through the 3C (Children Caring about Cancer) program that engages youth in secondary schools. He is glad to be joining the Persons Living with the NCDI Advocacy Fellowship to learn and expand on his knowledge to accommodate all other NCDI efforts to advocate for access to services for all people in Uganda and the region.Paladie Kampuhwe, Rwanda: Paladie Kampuhwe MATEGEKO is a Type 1 Diabetes Champion with a Bachelor’s degree in Healthcare Management and a concentration in Global Perspectives. After being diagnosed with Type 1 Diabetes and facing a lot of challenges including stigma, she decided to help others; people living with non-Communicable Diseases (PLWNCDs) like herself to overcome some of those challenges. As a person who lives with an NCD, she knows how these conditions affect someone’s life which is why she decided to be an advocate so as to help other vulnerable people who are not able to speak for themselves and are facing a lot of challenges, especially poverty. She has worked with the Rwanda NCD Alliance in helping PLWNCDs share their stories and the challenges they are facing so as to amplify their voices. That is why she is also very excited to be part of the Voices of NCDI Poverty Advocacy Fellowship so as to bring her unmatched interests and dedication to make its mission a success.
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Please reach out here if you would like to stay in touch with our team around the Voices of NCDI Poverty fellowship or related advocacy efforts! There will be many opportunities for others across the Network to work with and learn from the fellows as we move forward on campaigns and other opportunities together.
This week, the NCD Synergies project at Partners In Health has collaborated with the NCDI Poverty Networkto launch an exciting new initiative: the Voices of NCDI Poverty Fellowship.
The Voices of NCDI Poverty Fellowship is an 18-month paid opportunity (June 2021-December 2022) for three advocates who are people living with non-communicable diseases and injuries (PLWNCDIs) to help influence a call to action and growing social movement around one of the world’s biggest and most neglected health disparities: non-communicable diseases and injuries (NCDIs) that kill and disable millions of people in the poorest countries.
Through the fellowship, fellows will co-develop and implement advocacy projects and strategy, in close collaboration with the larger NCDI Poverty Network. Fellows will also be named to the Steering Committee of the NCDI Poverty Network and will have a voting role in the governance of the Network, as well as be provided individual mentorship and peer-to-peer support throughout.
Dr. Mahret Mandefro sits with Zeritu Assefa, Lidetu Gebeyas and Tigist Gebeyas after filming their experiences of living with type 1 diabetes and epilepsy in Ethiopia.
The Voices of NCDI Poverty Fellowship is an initiative that is rooted in an overarching goal of the Lancet Commission on Reframing NCDs and Injuries forthe Poorest Billion (NCDI Poverty Commission) to more fully address and prioritize the needs of communities living with severe, chronic NCDs and injuries in low-income countries. This has included a videography project to share the stories of people living with NCDs and injuries in settings of extreme poverty. We have also collaborated with youth and PLWNCDI leaders, National NCDI Poverty Commissions, and other civil society partners to advocate for equity in the global NCDI agenda and in achieving universal health coverage – particularly around proven, integrated care delivery solutions like PEN-Plus that would greatly increase access to quality care for those that need it most.
We have been inspired by the commitment of a growing community of PLWNCDI advocates over the years, and have developed this program to be a more structured home for collaborative advocacy efforts focused on reaching the most marginalized across the full spectrum of the NCDI burden — led by those most impacted.
We invite you to join us! We look forward to working with Fellows to help us shape the vision and reach of the NCDI Poverty Network. Please share with your networks or reach out to our team with any questions.
On Monday December 7, 2020, representatives of national NCDI Poverty Commissions in 15 low- and lower-middle-income countries formally launched the NCDI Poverty Network at a global virtual event titled, “NCDI Poverty Network Launch: Bridging a Gap in Universal Health Coverage for the Poorest Billion.” Additionally, 7 new countries joined the Network and announced that they would establish national commissions beginning in 2021, resulting in a combined total of 23 countries in the Network.
The event highlighted the work and ongoing efforts of the national commissions and underlined the primary goal of the NCDI Poverty Network – which is to build and expand a community of stakeholders focused on preventing the death and suffering of people doubly afflicted by NCDs and extreme poverty. Three strategic initiatives of the Network include:
Catalyzing the development of service delivery models through Integration Science
Accelerating implementation of PEN-Plus services for chronic severe NCDs such as type 1 diabetes, rheumatic and congenital Heart disease, and sickle disease
Building a social movement to finance care and social protection for people living with these conditions
Following the September 2020 publication of the Lancet NCDI Poverty Commissionreport publication, a draft charter for the NCDI Poverty Network was posted for public comment. The intent of the Network is to support the ongoing efforts of national commissions to implement the recommendations of the Lancet Commission. The NCDI Poverty Network will support countries through a four-stage process, ultimately leading to national implementation of priority integrated delivery models.
The event had two parts, a plenary session and four regional breakout discussions. Speakers included the Lancet Commission co-chairs and members of national Commissions from Nepal, Tanzania, Kenya, Ethiopia, Mozambique, Sierra Leone, Afghanistan, Liberia, Malawi, Haiti, and Chhattisgarh, India. Additionally, the event included speakers from the World Health Organization Regional Office for Africa (WHO/AFRO) and Africa Center for Disease Control (Africa CDC). Representatives from new National NCDI Poverty Commissions were also in attendance and the breakout discussion sessions featured perspectives from people living with NCDIs.
More than 330 people from organizations in over 53 countries participated in the plenary event, and more than 160 took part in one of four regional breakout discussion sessions for East Africa, Southern Africa, West Africa & the Caribbean, and South and Southeast Asia.
In the plenary, participants heard from:
Dr. Ana Mocumbi co-chair of the Lancet NCDI Poverty Commission (Universidade Eduardo Mondlane, Instituto Nacional de Saúde, Maputo, Mozambique): opened the plenary presentations with key findings and recommendations from the Lancet NCDI Poverty Commission for national-level stakeholders
Dr. Neil Gupta (Harvard Medical School, Partners In Health, Brigham & Women’s Hospital): highlighted successes of the National NCDI Poverty Commissions to date and announced new NCDI Poverty Commissions joining the Network in 2021, including Benin, Burkina Faso, Cambodia, Cameroon, DRC, Ghana, and Nigeria.
Dr. Mary Nyamongo (Kenya NCDI Poverty Commission) andDr. Biraj Karmacharya (Nepal NCDI Poverty Commission): highlighted progress, structure, and findings of their respective commissions.
Dr. Gene Bukhman co-chair of the Lancet NCDI Poverty Commission(Harvard Medical School, Partners In Health, Brigham & Women’s Hospital): presented content of the NCDI Poverty Network charter, discussing a four phase priority setting including advocacy, research, and implementation that will lead to national scale-up models for integrated delivery of priority interventions.
Dr.Prebo Barango(WHO AFRO Inter-Country Support Team for East & Southern Africa): promoted the integration of priority NCDI interventions through WHO PEN and PEN-Plus strategies and discussed shared challenges regarding NCDs in the African region, including lack of access to essential care for NCDs, healthcare workforce, referrals, and monitoring and evaluation systems.
Dr. Mohammed Abdulaziz (Africa CDC): spoke on the impact of the COVID-19 pandemic and double vulnerability of NCDIs and poverty.
Dr. Emmanuel Mensah at Harvard Medical School served as master of ceremonies for the event. Dr. Julie Makani, a global Lancet NCDI Poverty Commissioner and Professor of Hematology at Muhimbili University of Health & Allied Sciences, moderated the National NCDI Poverty Commission roundtable.
Following this presentation, participants had the opportunity to join one of four regional breakout discussions, facilitated by leadership from National Commissions across Tanzania, Ethiopia, Sierra Leone, Liberia, Mozambique, Malawi, India, and Afghanistan. Participants were encouraged to share ideas and insights on issues related to NCDIs for those living in extreme poverty in their respective countries and how the NCDI Poverty Network can accelerate progress for this population. Participants also heard perspectives from advocates speaking to their lived experiences as people living with NCDs, including Ms. Lea Kilenga with the Africa Sickle Cell Organization in Kenya, Mr. Chikhu Ngombe with Cancer Survivors Quest in Malawi, as well as patient and provider advocates from Haiti and India.
The meeting included participation from over 60 attendees representing leading institutions, including WHO HQ, UNICEF, The World Bank, World Diabetes Foundation (WDF), Medtronic Foundation, the Agha Khan Development Network, American Heart Association, Novartis, among others. The aim of the meeting was to identify new opportunities for technical collaboration and partnerships to pilot and expand PEN-Plus clinical services nationally across numerous countries in sub-Saharan Africa and South Asia.
The meeting was moderated and chaired by Dr. Ana Mocumbi, co-chair of the Lancet NCDI Poverty Commission and Director of the Mozambique Institute for Health Education and Research (MIHER). First, participants heard opening remarks from Dr. Prebo Barango of WHO/AFRO, Dr. Gina Agiostratidou from HCT and Sydney Yovic from JDRF. The opening speakers discussed the global disparities in access to care for severe NCDs such as type 1 diabetes, rheumatic heart disease and sickle cell anemia. They also highlighted that decentralized care for severe NCDs at first-level hospitals, (PEN-Plus), as a compliment to the Package of Essential NCDs (WHO PEN) for more common NCDs such as hypertension, type 2 diabetes and asthma is not only feasible, but possible in the next decade.
Lauren Brown / Partners In Health Dr. Jones Masiye, Deputy Director of Clinical Services at the Malawi Ministry of Health, presenting on experiences piloting PEN-Plus.
Next, the participants heard from Dr. Gene Bukhman, Director of the NCD Synergies program at Partners In Health and the Program in Global NCDs and Social Change at Harvard Medical School. Dr. Bukhman further highlighted the gross disparities in global health financing for NCDs, particularly severe NCDs, noting that the world’s poorest people continue to lack access to quality care. He explained that without significant institutional investment of additional funds and technical resources and partner collaboration, communities living in extreme poverty will continue to face the same challenges accessing care for severe conditions for years to come as domestic resources are also unlikely to be made available.
Following this presentation, participants heard from Dr. Fred Amegashie, Head of the NCD Division at the Liberia Ministry of Health and Social Welfare, Dr. Jones Masiye, Deputy Director of Clinical Services, Ministry of Health of Malawi and Dr. Darius Fenelon, Director of NCDs at Zanmi Lasante, as PIH is known in Haiti. Each presenter shared their experience piloting PEN-Plus and walked through next steps, as well as current challenges and barriers to achieving national scale-up. Finally, the group heard from Dr. Neil Gupta. Dr. Gupta presented on the success and progress of the 15 National NCDI Poverty Commissions established between 2016-2019. Of these 15 groups, 11 submitted Letters of Interest outlining plans to implement outpatient care for NCDs at first-level hospitals using the PEN-Plus approach. In the coming years, these outpatient clinics in rural hospitals would progress to serve as regional training sites for the country on the pathway to achieving national scale-up.
Lauren Brown / Partners In Health All 15 National NCDI Poverty Commissionsmembers.
As the presentations came to a close, Drs. Bukhman and Mocumbi invited partners and participants to share any reflections and comments on the meeting and dialogue. The group heard from Miriam Schneidman at the World Bank, Bent Lautrup-Nielsen of WDF and Drs. Temo Waqanivalu and Ould Sidi Mohammed from WHO HQ and WHO/AFRO respectively. These final comments drew on key themes from the discussion, acknowledging how difficult it has historically been to ensure that NCDs that disproportionately impact communities in extreme poverty are a priority given so many competing priorities in the global health and development spaces. However, each speaker underlined the moral imperative to address these disparities and work together to strengthen care for PEN and expand PEN-Plus if we collectively want to achieve quality universal health care.
