During the week of Monday May 21st 2018, the NCD Synergies team and others at Partners In Health joined UN member states and civil society from across the world at the seventy-first World Health Assembly (WHA71) in Geneva, Switzerland, Dr. Tedros’ first WHA in his new role as Director General.
An overarching focus of the week was the Director General’s call for universal health coverage in the now endorsed Global Programme of Work (GPW) for the start of his tenure at WHO, from 2018-2023. In the GPW, members states endorsed the “Triple Billion” targets – 1 billion more people benefitting from universal health coverage, 1 billion more people better protected from health emergencies, and 1 billion more people enjoying better health and well-being.
These messages resonated throughout the week across all agenda items, including those related to noncommunicable diseases (NCDs). The discussion on NCDs was encouragingly robust, with over 100 member states and non-state actors formally commenting on the upcoming UN High-Level Meeting on NCDs alone. Much of the more contested dialogue centered around fiscal policies for prevention measures for tobacco, alcohol, and sugar, but many other issues were raised. For instance, in an AFRO regional statement submitted by Gabon and additionally through individual comments, many African countries like Ghana and Uganda emphasized the importance of addressing gaps in access to treatment, highlighting in particular the burden NCDs inflict on the poorest and most vulnerable.
For these populations – people living with NCDs in settings of extreme poverty – a monumental win happened towards the end of this year’s WHA. On Friday May 25th, the Resolution on Rheumatic Fever and Rheumatic Heart Disease was officially adopted by the Assembly, a result of years of hard work and leadership from the Government of New Zealand, over 20 sponsoring member states, and organizations such as the World Heart Federation and RhEACH.
The RHD Resolution calls on WHO and member states to:
- Strengthen data collection and better address the root causes of rheumatic fever and RHD
- Improve access to primary care, including timely, affordable, and reliable access to diagnostics and essential medicines
- Meaningfully include people living with RHD at the center of RHD efforts and better prioritize children and young adults living with NCDs like RHD across the global health agenda
- Lead a coordinated global effort to prevent and control RHD, as a cross-cutting issue critical to health systems strengthening across NCDs, maternal & child health, and other priority areas
Rheumatic heart disease is a condition intricately tied to poverty. RHD disproportionately impacts children and young adults, particularly among the world’s poorest. Like many other severe NCDs in settings of extreme poverty, RHD is a preventable and treatable condition of infectious origin, exacerbated by social risks such as poor housing, overcrowding, and lack of access to treatment. If left untreated, many people with RHD will die unless they receive cardiac surgery.
The commitments in the RHD Resolution, if funded and prioritized appropriately, will go a long way towards a more equitable future for populations suffering from RHD. In addition to the recommendations in the Resolution, member states and civil society should also continue to advocate for expanded protocols and training to address gaps in management of RHD and other severe NCDs at first-level hospitals, as well as to address critical inequities in the availability of cardiac surgery.
Partners In Health, as part of the Global Health Council delegation, read a statement in support of the Resolution that afternoon. The NCD Synergies team was honored to read the words that had been written with, and on behalf of, PIH’s many colleagues and patients who have been personally affected by RHD over the years. But it is their stories and experiences that both expose the importance of addressing this critical and neglected issue and provide hope and a pathway forward to tackle RHD.
Dr. Emmanuel Rusingiza and Erneste Simpunga, for instance, demonstrate the challenges that patients face in getting access to life-saving care for severe conditions like RHD in poor, rural settings. Dr. Rusingiza is one of only a few pediatric cardiologists in Rwanda; he works tirelessly to connect children and young adults like Erneste to the care they need to survive – including cardiac surgery – which is possible through the support of organizations such as PIH and Team Heart.
As Dr. Rusingiza shared in the drafting process for the PIH statement on the RHD Resolution: “My voice will be a clinician’s voice advocating for my patients. We continue to be hopeless in helping young patients coming to us with very advanced RHD in settings where qualified personnel is still a paucity along with appropriate equipment to save these lives. This results in premature deaths. Investing in qualified human resources, focusing on decentralization of care and basic equipment like echocardiography is very needed in limited settings […] as infrastructure and trained personnel to run cardiac surgery services may take time.”
After undergoing surgery in 2008 through Team Heart’s support, Erneste is doing well. He is in medical school at the University of Rwanda and is becoming a more vocal patient advocate, serving on the 2017 Advisory Committee for NCD Alliance’s “Our Views, Our Voices” initiative. He will be shadowing at Boston hospitals and working with the NCD Synergies team on advocacy and research this summer.
Wesly Marcena, another young man living with RHD in Haiti, has also surmounted enormous odds. He began getting very sick at age 14, including a debilitating cough and regular fevers. He wasn’t diagnosed with RHD until years later, at age 20. By this time, he was experiencing significant heart failure, finding it more difficult to walk and breathe as he got weaker and weaker. Knowing that he needed treatment, he researched his options and traveled a long way to Hôpital Universitaire de Mirebalais, a PIH-supported referral hospital in central Haiti. PIH helped connect Wesly to the Haiti Cardiac Alliance, who were eventually able to connect him to cardiac surgery services in the Cayman Islands. It has been a long road for Wesly, but he has been able to manage his condition well since receiving surgery in 2016.
Like Erneste, Wesly has become an advocate, speaking out on behalf of others living with RHD in Haiti. Wesly travelled to Geneva in October 2017 as a participant of an NCD Alliance patient advocacy forum and contributed to the final version of the Advocacy Agenda of People Living with NCDs. Wesly was an inspiring youth voice over the two day dialogue, stating: “I’m thankful and lucky to be here today. I want governments like mine in Haiti to hear these stories and do more.”
In a video produced by NCD Alliance and NCDFREE as part of the “Our Views, Our Voices” initiative, Wesly concludes: “I’m telling my story […] to help people understand the situation in Haiti, so that all people with cardiac problems can access treatment and have the same opportunities as me.”
Partners In Health and the NCD Synergies team looks forward to working with WHO, UN member states, and leading organizations such as the World Heart Federation and RhEACH on addressing equitable access to care for RHD. Better prevention and control of severe NCDs such as RHD in settings of extreme poverty will allow for the opportunities that Dr. Rusingiza, Erneste, and Wesly envision for their countries.
For more information about Wesly and Erneste’s stories, check out profiles by RHD Action and Team Heart. More narratives sharing the experiences of people living with RHD can be found through our Voices of NCDI Poverty initiative.
Follow @RHDAction to stay up to date on progress towards implementing the RHD Resolution.