On Tuesday September 25th, 2018 our team, in partnership with the Program in Global NCDs and Social Change (PGNCDSC) at Harvard Medical School and the Leona M. & Harry B. Helmsley Charitable Trust, hosted a two-hour side-event during the week of the 73rd United Nations General Assembly. Over 130 people attended the event, including high-level participation from the Ministries of Health of Rwanda and Malawi, the World Health Organization, the World Bank, and a wide array of global health funding agencies, stakeholders, and peer institutions.
Dr. Julie Makani, Professor of Health and Allied Sciences at Muhimbili University and a global NCDI Poverty Commissioner, acted as Master of Ceremonies. She first welcomed David Panzirer, a Trustee with the Helmsley Charitable Trust, to welcome participants. In his address, David shared personal experience with type 1 diabetes in his family and emphasized that geography should not dictate access to quality care for severe NCDs like T1D.
Next, Dr. Sania Nishtar, co-chair of the WHO High-Level Commission on Noncommunicable Diseases and Founder and President of the NGO Heartfile, gave opening remarks. Dr. Nishtar challenged the traditional paradigm of “4×4” framing, and drew attention to congenital heart disease and other severe NCDs that disproportionately impact children, young adults, and people living in settings of extreme poverty.
Dr. Nishtar was then followed by NCD Synergies and PGNCDSC Director, Dr. Gene Bukhman, who represented the Global Lancet NCDI Poverty Commission and introduced efforts from the National NCDI Poverty Commissions and Voices of NCDI Poverty initiative. In his presentation, Dr. Bukhman shared the importance of reframing NCDs and injuries for the poorest billion, and the need to pursue a nationally-led priority-setting framework. This framework should reflect individual disease severity and better address the challenges faced by communities living in extreme poverty through approaches to integration science, such as clustered “PEN-Plus” services for severe, chronic NCDs at first level hospitals.
The event then transitioned to a moving panel discussion from people living with severe NCDs and care providers. We were privileged to first hear from Aldophmy Joseph via video, a young patient advocate living with type 1 diabetes in the Central Plateau of Haiti, as he was unfortunately unable to join us in New York due to visa challenges. We then moved onto a discussion with the following participants, moderated by Maia Olsen (NCD Synergies Program Manager):
- Erneste Simpunga – patient advocate living with rheumatic heart disease, medical student from the University of Rwanda
- Nancy Larco – Executive Director of Fondation Haïtienne de Diabète et de Maladies Cardio-Vasculaires (FHADIMAC)
- Cory McMahon – Director of Nursing & Midwifery at Partners In Health
The panel discussion was impactful in drawing attention to the need to put patients and care providers at the center of the global policy discussion of NCDs. Erneste shared his story of living with rheumatic heart disease and the challenges in accessing life-saving cardiac surgery in a country like Rwanda where those resources are not available yet. Both Dr. Larco and Cory then drew on the impact they had seen chronic diseases have on the patients and families they work with. As Dr. Larco said during the panel discussion: “I’ve watched families learn of a diagnosis and have to make impossible choices.”
Following this dialogue, we moved to a second panel discussion with representatives of five National NCDI Poverty Discussions, moderated by Dr. Neil Gupta (NCD Synergies Policy Director):
- Bhagawan Koirala, Nepal NCDI Poverty Commission
- Kibachio Joseph, Kenya NCDI Poverty Commission
- Mary Mayige, Tanzania NCDI Poverty Commission
- Wubaye Walelgne, Ethiopia NCDI Poverty Commission
This rich dialogue delved into some of the key findings from the respective countries represented by the National NCDI Poverty Commissions regarding the disease burden faced by those living in extreme poverty, as well as recommendations for priority-setting and action to address barriers in these populations. As Dr. Bhagawan Koirala stated in the discussion, “The poorest populations are not just faced with the high morbidity and mortality due to NCDs – the economic burden, the catastrophic expenditure and lost economic prosperity, are insurmountable for them.” As Dr. Joseph Kibachio underscored as well: “NCDs are non-communicable but their impact, their burden, and their impoverishment is communicable”.
The panel then turned to the audience, which included statements and questions from:
- Honorable Minister of Health of Malawi, Atupele Muluzi
- The Minister of State in charge of Public Health and Primary Health Care, Ministry of Health of Rwanda Patrick Ndimubanzi
- Etienne Krug, Director of the WHO Department for Management of NCDs, Disability, Violence, and Injury Prevention
- Florence Berteletti from the World Heart Federation
- Professor Agnes Binagwaho, Vice Chancellor of the University of Global Health Equity at Partners In Health and a Global NCDI Poverty Commissioner
Next, Dr. Tim Evans, Senior Director for Health, Nutrition, and Population at the World Bank, and Dr. Svetlana Akselrod, Assistant Director General for NCDs and Mental Health at the World Health Organization, were both welcomed to provide closing remarks. Dr. Evans, commended the work of the National Commissions in using data to make informed decisions on NCDI prioritization and budgeting. In his remarks, he drew particular attention to the synergy between NCDs and Universal Health Coverage, and the need to include NCDs and injuries of poorest populations in UHC planning. Dr. Akselrod also addressed the importance of this work, stating: “We must be partners for the poorest in the fight against NCDs.”
Finally, Dr. Gary Gottlieb, CEO of Partners In Health closed the meeting, and thanked the audience for their attendance and participation. He reminded those in attendance that, “NCDs are lifestyle diseases – lifestyle includes birth, existence and being, and impacts people at every stage of life.” Dr. Gottlieb called for the prioritization of those living in extreme poverty, and to address the conditions that disproportionately impact children and the most vulnerable.
We are so grateful to our speakers and partners for their support in this successful event and we look forward to reinvigorated dialogue continuing on these critical topics in months to come.
In addition to the Tuesday session, our team had the opportunity to engage in stakeholder meetings and a number of other events throughout the week of UNGA, including an event co-hosted by the American Heart Association on “Time to Disrupt the Health System: Novel Solutions for Quality Care in the NCD Era”. In this event, Erneste Simpunga told his moving story on a panel of people living with heart disease and other NCDs. Dr. Bhagawan Koirala participated in a second panel with health systems champions, emphasizing the importance of capacity-building efforts at secondary and tertiary level in countries like Nepal and underscoring why providing free tertiary services like cardiac surgery for children is an equitable and high-impact intervention for the very poorest.
Our team was also able to attend the Third High-Level Meeting on NCDs on Thursday, along with colleagues from Ministries of Health and national governments, civil society, and the private sector. In her remarks within the multistakeholder panels, Dr. Sania Nishtar used a portion of her statement to call on the UN and member states to address the needs of the poorest billion, as part of a Universal Health Coverage agenda grounded in principles of human rights and equity.
On Thursday during the High-Level Meeting, the political declaration was adopted by UN Member States. The declaration falls short of prioritizing the needs of the poorest and most vulnerable. Our team commits to continuing to push the boundaries of NCDI framing to ensure that the needs of those who endure the greatest amount of suffering are met and addressed.