Welcome
Welcome to the third edition of the quarterly RHD Pulse newsletter! In this edition we share work from the WHO South-East Asia region alongside key global updates and a patient spotlight.
The WHO South-East Asia Region has 11 Member States: Bangladesh, Bhutan, Democratic People's Republic of Korea, India, Indonesia, Maldives, Myanmar, Nepal, Sri Lanka, Thailand, Timor-Leste. WHO has country offices in all 11 Member States. The WHO South-East Asia Regional office in based in New Delhi, India.
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Organisations to Know About in the South-East Asia Region
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East Timor Hearts Fund, Timor Leste
East Timor Hearts Fund is and Australian medical NGO dedicated to providing life-saving heart surgery for young people from Timor-Leste (East Timor), as well as heart-health education, prevention and research projects.
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The Rheumatic Heart Club, Kerala, India
Established in 1997 by founder and coordinator Prof Dr S Abdul Khadar, the Rheumatic Heart Club is a self-help group. Their main strategy to fighting RF and RHD in the region has been public education through mass campaigns and get-togethers for patients and doctors. Dr Khadar has recently implemented Reach’s RF/RHD Community Awareness Flipchart, translated to Malayalam, for educating at-risk communities in Kerala.
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- Early diagnosis can beat the valvular heart disease - read about it in the Times of India.
- India’s First 4th Generation Transcatheter Mitral Valve Repair Performed At Chennai's Apollo Hospitals - read about it here.
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Ongoing Drug Trial in RHD Patients, India
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A randomised placebo-controlled trial examining the efficacy and safety of the drug Digoxin in RHD patients is currently underway across 10 sites in India. The trial began in 2021 and is expected to last 4 years. This work is being led by Professor Ganesan Karthikeyan of the All India Institute of Medical Sciences (AIIMS), New Delhi, India. Further details can be found here.
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INVICTUS Trial Results Shared at ESC
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Barcelona, Spain, 28 Aug 2022: The results of the largest trial in patients with rheumatic heart disease and atrial fibrillation have been published. INVICTUS was a randomised, open-label, non-inferiority trial comparing two anticoagulation therapies - vitamin K antagonists (VKA, also known as Warfarin) and rivaroxaban.
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Professor Ganesan Karthikeyan of the All India Institute of Medical Sciences (AIIMS), New Delhi, India on why this trial was important to conduct: “Rheumatic heart disease largely occurs in low- and low-middle income countries where maintenance of the international normalised ratio, required for the effective use of VKA, is poor. Direct oral anticoagulants (DOACs) do not require monitoring and we reasoned that, if safe and effective, they would fulfil a major unmet need in these patients.”
The main finding from this study was that VKA reduce cardiovascular events and mortality, without increasing major bleeding, compared to rivaroxaban, and should therefore remain the standard of care for this patient population.
Preview the paper here.
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Professor Liesl Zühlke, Vice-President of the South African Medical Research Council, on why rheumatic heart disease must become a global health priority, the challenges we face, and her message to policymakers.
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Anu has come a long way since her first diagnosis of RHD at 11 and having two open heart surgeries. She now holds two master’s degrees, is an Advocacy fellow with NCDI poverty network, and is passionate about bringing the patient voice to decision-makers.
She shines a light on the financial, social, and personal challenges faced, particularly as a young woman with RHD, in her story told as part of the latest WHO film series on people living with noncommunicable diseases: Nothing For Us, Without Us: Anu’s Lived Experience in Nepal.
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Anu Gomanju, RHD patient and advocate based in Nepal.
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We caught up with Anu and asked her about what she thinks our RHD community should know, and actions leaders can take.
“People with lived experience are invaluable to helping understand barriers and identify solutions to treatments, programmes and policies and to also aid in the design of sustainable interventions. It is crucial because our voices and experiences can be one of the resources which the stakeholders are saying they are lacking in achieving the global target set on NCDs, including RHD. Therefore, PLWRHD meaningfully engaged in the co-design, co-production or the implementation of related health services, programmes, or policies – ultimately the things that matter most to us”
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Summary of key challenges with potential solutions proposed by Anu
| Challenge |
Potential Solution |
| Patient commitment to treatment, medication and care |
Invest in health literacy, equitable access to treatment and prevention. Not only is this important for treatment and preventing comorbidities, but also for patient empowerment, especially for those who are poor and vulnerable. |
| Implementation of new technologies, health services, programmes or policies for PLWRHD |
Research and innovation areas should be co-explored in consultation with PLWRHD. Create a Patient Advisory Group or Patient Engagement Advisory Committee to meaningfully engage PLWRHD in the co-design, co-production or implementation of health services, programmes or policies (ultimately the things that matter most to us), and to assess the real impact of the innovations and interventions. |
| Case finding |
We can collaborate on RHD prevention, treatment, and data collection, agenda setting, and other related issues. Doctors or any health care providers or researchers have a great opportunity for case finding if they perceive PLWRHD as partners and not just service seekers or people with conditions. |
| Ensuring health-related quality of life of PLWRHDs |
A person with RHD is also an expert. Skilled people, such as medical care providers and researchers, go to school and acquire their degrees or skills to do their work. But, we, patients and people living with conditions, learn from our pains, experiences of sadness and happiness, and the way we overcome challenges related to our conditions to learn how to live with it throughout the life. We can discuss the most crucial factors for having a high quality of life despite this disease. |
| Reducing the burden of RHD |
Increase commitment and investment in preventing RHD and secure qualitative treatment for PLWRHD. |
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Are you working on something Strep A, RF, or RHD-related that you would like to see in the next edition?
Please get in touch by responding to this newsletter.
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