“[People] have to raise awareness […] What we want to tell the government is that each life has value. The government must get involved with this issue. Let them see the work. Let them get involved. Let’s see what government can do – let them say that ‘we are here’ so that we can have hope.”
– Misrak Tarekegn and Estifanos Balcha, type 1 diabetes advocates, Ethiopia
Global NCD policy has predominantly framed NCDs as conditions of affluence, tied to behavioral and metabolic risk factors affecting wealthier and older populations in urban areas. This narrow paradigm has been replicated in global strategic plans, with most targets for NCDs designed to address risk factor prevention rather than a more comprehensive health systems approach. To date, only a small fraction of development assistance for health is being allocated to NCDs globally, with lowest-income countries facing the most significant gaps in financing.
The global NCD agenda has neglected the world’s poorest and most vulnerable populations in Sub-Saharan Africa and South Asia in both policy and financing. This imbalance has forced low-income countries to work with limited technical support and financial resources to address complex and severe chronic conditions that disproportionately impact poorer, younger populations, especially in rural areas.
How we are moving forward
National NCDI Poverty Commissions
Since 2015, the NCD Synergies project has supported The Lancet Commission on Reframing NCDs and Injuries for the Poorest Billion (NCDI Poverty), co-chaired by NCD Synergies Director Dr. Gene Bukhman and Ana Mocumbi from the Mozambique Ministry of Health. The aim of the Commission is to reframe NCD policy in the interest of equity so that global financing and policy-making institutions can more fully address the needs of the poorest patients in low-income countries. The Commission is working with a group of low- and lower-middle-income countries with large concentrations of people living in extreme poverty to establish national NCDI Poverty Commissions to assess the burden of disease from NCDIs among the poorest and to identify and advocate for policies and integrated delivery platforms that would effectively address and reduce that burden.
In 2016, ten countries established national NCDI Poverty Commissions or Groups, including:
Six of those countries have completed their analyses and published reports summarizing their key findings and recommendations. An additional four countries have formed Commissions in 2019 – Uganda, Sierra Leone, Zambia, and Zimbabwe – with further expansion expected in the coming months.
National Commission members have engaged in numerous knowledge-sharing platforms as well as advocacy and policy activities, calling for a global NCDI agenda more inclusive of populations living in extreme poverty. Many countries participated in the Voices of NCDI Poverty Project – a videography platform to highlight the lived experience of people, families and caregivers living with severe, chronic NCDs in settings of extreme poverty.
Like with policy and financing more broadly, clinical protocols for NCDs in most lowest-income countries have tended to focus narrowly on more common, less severe NCDs at health center level. Yet, some of the most catastrophic health and financial consequences in the world’s poorest settings are the result of more severe, complex NCDs such as type 1 diabetes (T1D) and rheumatic heart disease (RHD). These conditions require more advanced management at district hospitals, with strong linkages for referral and mentorship to health centers.
Since October 2017, the NCD Synergies project at Partners In Health and the Program in Global NCDs and Social Change at Harvard Medical School (HMS) have been collaborating with WHO in the African Region to develop a regional strategy to support countries in the African Region to decentralize high-quality integrated outpatient care for severe, chronic NCDs. This strategy – “PEN-Plus” – builds on existing resources for health center level, the package of essential NCD interventions (WHO PEN). Much of this work has been based on the leadership of PIH clinical programs in Rwanda, Malawi, and elsewhere, as well as findings from National NCDI Poverty Commissions in various countries throughout the region.
PEN-Plus strategies provide an integrated platform at first-referral level hospitals to address priority conditions such as type 1 diabetes (T1D), rheumatic heart disease (RHD), and sickle cell disease, as well as palliative care for advanced malignancies and other conditions. PEN-Plus can be delivered by mid-level providers at specialized outpatient clinics, see here the PEN-Plus Toolkit with resources for implementers. PEN-Plus approaches are also designed to complement and accelerate PEN through offering an opportunity to develop the leadership needed to train, supervise, and mentor implementation of chronic care services for more common and less severe NCDs at health centers.
PEN-Plus was first introduced to member states with the WHO AFRO region at an official side event at the August 2018 WHO Regional Committee for Africa in Dakar, Senegal. WHO HQ, WHO AFRO, Ministry of Health Rwanda, member states throughout the region, and various partners reconvened with PIH and HMS on PEN-Plus at a Regional Consultation in Kigali, Rwanda on “WHO PEN and Integrated Outpatient Care for Severe, Chronic NCDs at Referral Hospitals in the African Region (PEN-Plus)” in late July 2019. PIH and HMS will continue to work with WHO AFRO and regional partners to develop PEN Plus and disseminate these resources to Ministries of Health throughout the region.