1st World Congress on Rheumatic Heart Disease – “a truly global movement”
“We must not forget the human faces behind these statistics. RHD is a burden that falls disproportionately on the most vulnerable. These statistics are not just numbers; they are lives interrupted.”
– WHF President-Elect Jagat Narula
The 1st World Congress on Rheumatic Heart Disease in Abu Dhabi, hosted by the World Heart Federation (WHF), offered up an agenda packed with invited talks and abstracts from 52 countries. It brought together rheumatic heart disease (RHD) experts, including researchers, practitioners, patients, and advocates, to review the latest research, engage with global leaders, and explore practical and effective solutions to ending RHD once and for all.
WHF President-Elect, Jagat Narula, welcomed delegates saying: “It is indeed a truly global movement: I am impressed by the diversity of our audience and our speakers who come from over 52 countries across the globe, all with the same goal of ending RHD.”
Amy Verstappen, Global ARCH President, was interviewed by Kate Doherty-Schmeck (Global ARCH Executive Director) in the opening plenary via video where they discussed Global ARCH’s important role in addressing patients’ needs, with the ultimate goal to end RHD and improve the lives of those living with the disease. Amy gave concrete examples of how Global ARCH member groups are leading the way by using the power of the patient voice to create change. She urged the professional and clinical community to partner with patient groups to better understand the needs of patients to improve care. The collaboration of patients and the clinical community can make a greater impact to #EndRHD.
Global ARCH was well represented by Medical Advisory Board Members Dr. Liesl Zühlke, Dr. Krishna Kumar, and Dr. Dominique Vertoort, and Board of Director Members Anu Gomanju and Flavia Baturine Kamalembo, both RHD patients and active patient advocates. Conference Chair Dr. Zühlke, University of Cape Town, presented at the opening ceremony saying, “We have heard many talks today on the irrefutable evidence on the morbidity and mortality of RHD that disproportionately affect LMICs…What is important is for WHO Member States to take action.” She added, “Don’t ignore that sore throat!”
Anu Gomanju shared her insights as a patient advocate and about her lived experience and its impact via a moving short video. Anu is representing the NCDI Poverty Network, Kathmandu Institute of Child Health, and Global ARCH. She said, “This RHD Congress is a win and a dream come true for the people living with RHD who advocate for this, as well as for those who don’t know about rheumatic heart disease and how hard it is to live with.”
On Day 2, Anu grabbed the attention of the entire room when she said, “This morning, I had palpitations. I was thinking whether I should let the RHD Congress know that I could not be on the panel. This is what we as patients with RHD have to deal with.” She stressed the importance of including patients and their families in research and decision-making.
Dr. Krishna Kumar, Amrita Institute of Medical Sciences and Research Centre, and Global ARCH Medical Advisory Board Member, spoke about access to catheter-based therapies for RHD, the need for catheter registries in LMIC, and surgical risk stratification for patients with RHD. “Poor quality care can be far more damaging than no care.” He called for establishing multicenter catheter registries LMICs, quality improvement, and planning, saying, “We have different populations, different diseases, different resources [vs. HICs].” He also noted that “Valve repair is better [than replacement], but not everyone gets it in time…the discussion is not what is better, but how do we get patients to surgery in time?”
Dr. Dominique Vervoort, University of Toronto, and Medical Advisory Board Member (and social media whiz!), spoke about improving access to cardiac surgery for the six billion without care. He emphasized the lack of access to safe, timely, and affordable cardiac surgical care for the 6 billion people, including the 40+ million people living with RHD, saying that “RHD is a neglected disease of poverty.”
Global ARCH Board of Directors Member and RHD patient advocate, Flavia Baturine Kamalembo, Uganda Heart Institute, presented at two sessions and spoke about the impact of patient support groups in addressing gaps in RHD care. She recommended forming an organized formal process of linking all patients with RHD lived experience to available support groups. These groups, she said, “need to be supported – financially and otherwise – so they can achieve their goals. They should also be divided to cater to specific populations, such as adolescents with RHD, women of reproductive age, etc. because the needs are different throughout life.” Flavia also encouraged more collaboration between patients and providers to address especially around misconceptions and concerns about RHD.
At the closing ceremony Dr. Liesl Zühlke said, “I am immensely proud of what we have achieved over the course of these three beautiful, inspiring days. We had the chance to meet with colleagues and friends, old and new, who share the same passion and determination to ensure that rheumatic heart disease is no longer a threat to the millions affected today.”
Global ARCH is incredibly proud and honored to have these distinguished leaders participating in this seminal World Congress. We are confident that their words and actions will contribute to finding effective solutions to addressing the needs of RHD patients, with the goal of eradicating RHD once and for all.
“WHF believes that every individual deserves access to the best possible heart care, and this belief drives our actions and initiatives. By addressing RHD, we are not only pursuing our mission of ensuring cardiovascular health for everyone, but also recognizing that RHD is a social justice issue, thriving where poverty and inequalities are the highest.”
– WHF President-Elect Jagat Narula