The Australian Lung Foundation Supporting people affected by chronic lung disease

1. The Australian Lung Foundation Supporting people affected by chronic lung disease Peter Frith Chair, COPD National Program The Australian Lung Foundation Professor and Head of Respiratory Services Southern Adelaide Health Service First World Conference of COPD Patients Rome, June 2009

2. Who are we? • Not-for-profit organisation, without on-going government funding • Established in 1990 by professional society (TSANZ) • Autonomous, with representative National Council • Brisbane-based with national representation • 12 staff (admin, support, projects)

3. Mission • P promote lung health • R raise funds to encourage research into lung disease • I influence public policy • S support people living with lung disease • E educate the community on impacts of lung disease “2009 Strategic focus to develop partnerships with industry/corporates & governments, evolve lung disease programs, grow LungNet”. CEO ALF

4. Programs • LungNet Information & Resource Centre • Chronic Obstructive Pulmonary Disease • Lung Cancer • Lung Cancer Clinical Research (ALTG) • Interstitial Lung Disease • Multi-Centre Trials Network (MCTN) • Research Awards

5. COPD in Australia

6. Burden of COPD in Australia • The sixth biggest killer in Australia (AIHW) • The third leading burden of disease (Mathers) • Affects up to one in five over age 40 (BOLD) • Three out of five don’t know they have COPD • 52,000 hospitalisations/year (AIHW) • The second leading cause of avoidable admissions to hospital (AIHW) • Average hospital stay 7.5 days (AIHW)

7. Burden of COPD in Australia • Economic Impact of COPD $97 billion • $8.8 billion financial costs • Productivity • Direct health expenditure • Welfare payments and taxation foregone • $89.4 billion • Lost wellbeing due to disability and pre-mature death

8. Who bears the (financial) costs? Access Economics 2008

9. Australian Lung Foundation’sCOPD National Program

10. To reduce the burden of COPD in Australia Clinical Support Community Awareness Patient Support Research Government Advocacy COPD National Program

11. COPD Committee Structure National Council

12. COPD Coordinating Committee COPD-X Evaluation Committee

13. Clinical Support - Guidelines • Resources to help clinicians • COPD-X Guidelines • 2.25 million hits in 2008 • Action Plans • COPD-X Checklist • Pulmonary Rehab Toolkits • “Check” program through RACGP • Resource kit (slides etc)

14. Community Awareness Purpose • Early diagnosis • Seek test from GP Activities • Annual World COPD Day • Winter Campaign • ‘Clinical Winter’ June 1 • Patient stories • ‘Breath of Life’ music festival • Advocacy campaigns / ongoing

15. World COPD Day 2008 Patient TaskForce

16. Pulmonary Rehabilitation • Hospitalisations reduced by 46% • total bed days down by 62% • 1% have access in Australia • ALF role • ALF data base • Pulmonary Rehab Toolkit and Evidence Guidelines on dedicated website • www.pulmonaryrehab.com.au • Indigenous Train-the-trainer • Advocacy

17. Support for Self-Management • Patient handbook • 114 support groups • 58 rural/remote • Educational resources • Use of oxygen • Better Living with COPD • What is COPD • Web-site • 25,000 – 40,000 visitors/month • www.lungfoundation.com.au

18. Self-Management Supporting well-being in the community • Pilot low-cost community-based exercise maintenance following pulmonary rehab • Targeting fitness industry • Fitness instructors trained in pilot areas • First classes in July

19. LungNet • Freecall number - 1800 654 301 - 4,594 help calls 2008 • Education brochures • Quarterly LungNet News • 12,400 households • Self-help support groups • Pulmonary rehab database • Education days in all States • Dedicated website • www.lungfoundation.com.au

20. Research Webster Award for Higher Degree Study $100,000 BI COPD Fellowship $120,000 “Pathways to Lung Health: Enhancing self-efficacy in COPD”. Dr Julia Walters Australasian COPD Research Network (ACORN)

21. The ALF’s strategy for the Future • Indigenous Lung Health • Increase early diagnosis through: • Increased access to Spirometry • Greater use of guidelines at primary care • Equitable access to Oxygen through National Registry • Wider access to Pulmonary Rehabilitation • Greater awareness by public and government • Self-management

22. Acknowledgements The ALF COPD Coordinating Committee Director of COPD National Program: Heather Allan Executive: A/Prof Christine McDonald, A/Prof Ian Yang, Prof David McKenzie The ALF LungNet Team Program Development Manager: Juliet Brown The COPD Patient TaskForce Chairs: Dr Bill Scowcroft (d), Bryan Clift, Caroline Scowcroft The ALF National Council National President: Dr Bob Edwards Chief Executive Officer: William Darbishire Director of Development: Margaret Goody COPD-X Guidelines Evaluation Committee Executive Officer: Juliet Brown Chair: Prof Michael Abramson Pulmonary Rehab Committee Executive Support: Juliet Brown, Heather Allen Chair: Dr Jenny Alison My patients and colleagues at Repatriation General Hospital and Flinders Medical Centre