1. COPD Patients' Unmet Needs: The Japanese Experience First World Conference of COPD Patients Jun 14, 2009 (Rome, Italy) Yuma Hoshino MD, PhD and Michiaki Mishima MD, PhD Dept. of Respiratory Medicine, Kyoto University, Japan

2. Global Mandate For COPD Care And COPD Patients’ Bill Of Rights 1. The right to receive early and accurate diagnosis 2. The right for information and education about COPD 3. The right for support and understanding 4. The right to receive care and treatment that will benefit them 5. The right to their fair share of society’s involvement and investment in their welfare and care 6. The right to advocate with other COPD patients and supporters for improved COPD care and COPD prevention 7. The right to safe air and environment

3. Nippon COPD Epidemiology (NICE) Study A Nation-wide Survey of COPD in Japan ('00) Airflow Limitation in 10.9% of 2343 subjects (> 40 y.o.) 95% of COPD patients have been undiagnosed in Japan Undiagnosed > 5 mil. Disease Prevention, early diagnosis, and early intervention are required. diagnosed 0.22 mil.

4. Raising Awareness of COPD – GOLD Japan yearMedia forumPublic event (COPD screening) 2002 “Early intervention of COPD” airflow limitation 2003 “COPD - state of art” Tokyo7.3% (33/452) 2004 “COPD - treatable and preventable disease” Tokyo8.2% (53/643) 2005 “Regional effort on COPD care” Tokyo, Kyoto7.6% (79/1,044) 2006 “A Revised guideline for COPD” Kyoto, Fukuoka9.1% (73/803) 2007 “Medical network for COPD care” Sapporo9.5% (41/433) 2008 “Lung age for management of COPD” Activities on World COPD Day;

5. “Lung Age” for Patient Education Easy to understand compared to conventional spirometric indexes. Facilitate awareness of health status, useful for smoking cessation, early detection and intervention of COPD. actual ageLung age

6. Based on surveys on 4,000 medical staff and on 5,000 patients (2004-2005.) Japanese White Paper on Home Respiratory Care

7. White Paper – Survey on Medical Staff Issues on LTOT raised by medical staff; 1. Need for reevaluation of LTOT criteria (>50%) pulse oxymetry on exercise (42%), during sleep (40%) 2. Poorly distributed pulse oximeter (16%) 3. Clinical care system not well established (43%) 4. Unsatisfactory LTOT equipment oxygen concentrator 85%, portable oxygen 94%

8. White Paper – Patient Survey LTOT-receiving patients hoped to improve; 1. Limited activities of daily living Fear of breathlessness (88%) Not confident being alone (50%) Restricted at home (21%) 2. Treatment, education and support Hope for self management of breathlessness (80%) Limited access to pulmonary rehabilitation (49%) and educational program (55%) Expensive pulse oximeter (49%) 3. LTOT service Worry about service in emergency (57%) Poor portability of oxygen device (62%) Demands on reduced electricity cost and rental of pulse oximeter

9. LTOT receiving patients hoped to improve; 4. Economic burden Direct medical cost >12,000yen/mo. (26%) Indirect medical cost >10,000yen/mo. (36%) 5. Use of physical disability welfare Receiving the service (83%) Class I (severe, 36%), Class III (moderate, 52%) Dissatisfied with the classification (30%) 6. Long-term health insurance care service Receiving the service (32%) Class I (minimal service, 66%) Dissatisfied with the service (32%) White Paper – Patient Survey

10. Recent Activities of JRS and Patient organization 1. Improve the education and support for self-management for respiratory care patients Guidelines for Respiratory Care and Rehabilitation. Web announcement of pulmonary rehabilitation centers. 2. Approaches to welfare Proposal to the Japanese Health Ministry on 1) improving the quality of LTOT service, 2) reduction of medical cost for respiratory care, 3) classification of respiratory disability.

11. 3. Creating a system of safe and anxiety-free home respiratory care Revision of White Paper (Due in '10) 4. Increase public awareness of respiratory diseases and patients with respiratory disabilities M edia forum and public event on World COPD day. Lung Day (Aug 1), Respiration Day (May 9). Recent Activities of JRS and Patient organization

12. The White Paper of Respiratory Care is informative to reveal COPD patients' unmet needs. Based on the White Paper, the JRS has proposed national guidelines for respiratory care, and worked with Japan’s health ministry in cooperate with patient organizations to implement these guidelines. Conclusions