Prof. Greg Roth from the IHME in Washington presented the very first worldwide data on PAH at the 14th Annual Scientific Congress of the Pulmonary Vascular Research Institute (PVRI) held in Lima, Peru. The interactive session was entirely devoted to the global burden of pulmonary hypertension.
This exciting project, which has been adopted by the World Health Organisation (WHO), as their official database for global disease, will uncover the prevalence of pulmonary hypertension around the world. Prof. Mark Huffman from Northwestern University set the background by reviewing the current status of global health, and acknowledging the challenges facing the PVRI in their efforts to make diagnosis and treatments available.
The PVRI is undertaking a serious effort to increase awareness of pulmonary vascular disease worldwide, and especially in low-middle income countries. Prof. Werner Seeger presented the preliminary features of the GoDeep Project, a PVRI initiative, that will allow the merging of worldwide databases into a single registry that will provide detailed characterisation of the patients with pulmonary hypertension that is expected to support future drug development.
What is the IHME study?
The Institute for Health Metrics and Education (IHME), based at the University of Washington School of Medicine, has been instructed by the World Health Organization (WHO) to conduct the Global Burden of Disease Study. For the first time this study includes pulmonary vascular diseases. Dr Gregory Roth leads cardiovascular disease for the IHME’s landmark Global Burden of Disease Study. Dr Roth presented the Ghazwan Butrous keynote lecture during our Annual World Congress in Lima, which received high interest and delegate ratings. The first indications of the study already reveal that the prevalence of pulmonary hypertension and pulmonary vascular diseases is much more widely spread throughout the world as our current estimates indicate.
How does this fit within the wider PVRI global health agenda?
The above presents the PVRI with a unique opportunity to position the organisation as a reputable voice of authority in PVD on the global stage and work with partner organisations such as the WHO, the NCDA (Non-communicable Disease Alliance) and the WHF (World Heart Federation) to promote better healthcare and drug availability for all patients. The final results of the Global Burden of Disease Study are expected to be released in 2022. The PVRI is now actively working towards the development and implementation of a strategy surrounding the publication of relevant position statements, guidelines, country-specific documents that are aimed at improving patient care.
What has already been done?
The PVRI has nominated a ‘Global Health Working Group’ including eminent members from across the world. The first meeting took place at the PVRI’s Annual World Congress in Lima, Peru on 2 February 2020. The Global Health Working Group has been tasked to actively maintain close relationships with the NCDA, regularly attending web casts and web conferences and sharing PVRI statements and documents via the NCDA website. Furthermore, Paul Corris and Majdy Idrees attended the NCDA Forum in Sharjah, UAE in February 2020 to promote global awareness of PVD at an international level.
What are the next steps?
The PVRI will shortly appoint a global health fellow to join the IHME project and work closely with Dr Roth. We are also considering an application to the WHF to set up an ‘Emerging Leaders Programme’ to nurture the future generation of PVD leaders in the field.
The PVRI is positioning itself to become the leading advocate for Global Health related issues arising from pulmonary vascular disease and to fully represent the needs of all patients worldwide who develop this devastating condition.
Professor Stuart Rich, one of the leaders of the PVRI Global Initiative stated:
“This is truly a landmark moment for the PVRI and the global community. It speaks to the core of the PVRI mission, and should begin impacting the lives of patients in need around the world.”
Professor Paul A Corris, from The Faculty of Medical Sciences Newcastle University UK, the current chairman of the PVRI Board and co lead for PVRI’s Global Initiative said:
‘The PVRI is uniquely placed to advocate for improvements in recognition, management and access to beneficial therapies for patients with pulmonary hypertension on a truly global basis. We believe that the true global burden of disease is much higher than previously considered making pulmonary hypertension a major cause of morbidity and mortality within the worlds non communicable diseases.’