Burden of disease & the Australian Rheumatic Fever Strategy

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1 Burden of disease & the Australian Rheumatic Fever Strategy RHDA workshop March 2016 Brisbane Convention Exhibition & Centre Claire Boardman Deputy Director, RHDAustralia BN, Cert IC, MPH, CICP, Senior Lecturer Griffith University Qld. Streptococcus pyogenes bacteria, Pappenheim s stain

2 Born in 1812 England 2 nd of 8 children One of Victorian England s most popular novelists What does Charles Dickens have in common with rheumatic heart disease?

3 WHAT HISTORY TELLS US RF was leading cause of death in people aged 5-20 years in US 100 years ago Mortality rate was 8-30% from carditis and valvulitis this decreased to 4% by 1930s. Following penicillin use mortality rate < 0% by 1960s but remains at 1-10% in developing countries. Before penicillin, 60-70% of patients developed valve disease, compared to 9-39% since penicillin was developed.

4 RHEUMATIC HEART DISEASE (RHD) NEGLECTED NCD OF POVERTY

5 The burden of disease worldwide Estimated million people worldwide live with RHD, 90% of whom live in developing countries Acquired in childhood and symptomatic from 1 st decade of life. Causes 233, ,000 deaths each year. RHD is a disease of the vulnerable and impoverished worldwide. RHDAlliance atlas

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9 The burden of disease Australia > 6000 on RHD Control program registers Highest prevalence of all jurisdictions in NT Average age of ARF onset is between 5 14 A recent ECHO screening study of Indigenous children 5 14 years, prevalence of RHD of 8.6/1000 with none detected in non-indigenous cohort (Roberts 2016) Reduced life expectancy following valve surgery years with survival time poorest within 30 days of surgery and at 5 years.

10 Distribution of disease Australia wide Noonan 2013 Incidence, prevalence, progression Lawrence 2013

11 This is what we know

12 1. Burden of disease 2. Exposure to GAS 3. Response to GAS infection 4. Diagnosis and management of sore throat 5. Diagnosis of ARF 6. Prevention of ARF recurrence 7. Early diagnosis of RHD 8. RHD in Pregnancy 9. Medical management 10. Surgical care for RHD

13 THE ARF/RHD PATHWAY PRIMORDIAL PRIMARY SECONDARY TERTIARY Stop development of risk factors Prevent GAS infections Target populations at risk Stop sore throats* & manage skin sores Diagnose & manage ARF Secondary Px with BPG Adherence rates Surgical intervention Valve replacement Noonan et al 2012: renewed emphasis on treatment of sore throat in high-risk groups

14 PRIMARY HEALTHCARE MODEL 1978 WHO ALMA ATA DECLARATION Social approach to health founded on human rights framework Based on economic and social justice Affordable, accessible, appropriate Considers culture, environment, ethnicity SOCIAL DETERMINANTS OF HEALTH INCLUDE: Stress Social exclusion Unemployment Addiction Availability of healthy food Availability of healthy transportation Social support networks Early childhood development Social gradients (shorter life expectancy, the poorer you are > disease risk)

15 NATIONAL COORDINATING UNIT/RHDAustralia Based at Menzies in Darwin, NCU established in 2009 to support control of RHD in Australia Funded under DoH Rheumatic Fever Strategy AIMS: Reduce death and disability from ARF/RHD in Australian Aboriginal and Torres Strait Islander people by: Supporting RHD jurisdictional programs Surveillance and reporting system Disseminating EB practice guidelines Increasing community awareness of ARF/RHD & prevention

16 The Australian RFS Data Collection System Central repository for collection of ARF and RHD data against a recommended clinical Data set and key performance indicators The unknowns Immigrant and refugee populations Urban populations NSW and Victoria Economic burden of disease * Data linkage approach to develop a national overview * * CRE Endgame

17 THE GLOBAL GOAL (25 x 25 < 25) Development of World Heart Federation (WHF) Position Statement on the Prevention & Control of RHD in 2010 Broader goal of reducing premature mortality from non-communicable diseases by 25% by 2025, endorsed by all WHO member states as part of the Global Action Plan on non-communicable diseases. 25% reduction in RHD mortality in those >25 years of age by 2025

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19 What we know & what we don t Delays in service delivery Gaps in continuum of care Lack of knowledge (patients, clinicians, and community members) How do we get here? Large scale health system strengthening Improvement in delivery of PHC (change at multiple levels)

20 100 years ago RF and RHD was the leading cause of death in 5-20 year olds And then.. In Australia and other high income countries.it disappeared And now.. In Australia we have the highest recorded rates. in the world It was the best of times, it was the worst of times.