1. UPDATING OF HEMOPHILIA CARE IN VIETNAM VIETNAM HEMOPHILIA ASSOCIATION Dr. Nguyen Thi Mai, General Secretary of Vietnam Hemophilia Association 1/22

2. Population: 90 mil. Number of PWH estimated: about 6.000 Number of PWH diagnosed: 2.400 -7 HTCs in nationwide -Patients organizations: 3 chapters, 4 clubs, 3 peer groups. -: HTC - : Patients organizations Hemophilia Care in Vietnam 2/12

3. Factor concentrate used (iu/capita) 3/22

4. Increase public awareness 4/22

5. Training for medical staff International training course about hemophilia for 50 doctors in nationwide to expand satellites hemophilia treatment centers in the future 5/22

6. Training for patients and families 6/22

7. Publication 7/22

8. Advocacy -From 2015, poor people mustn’t co-pay -For other people, co-pay not exceed 315 USD/year -Advocacy for home treatment and prophylaxis with the Ministry of Health and Vietnam Social Insurance 8/22

9. Home Equipment Adaptation Support Project -Budget: 5.000 Euro (121,245,000 VND) VHA has purchased and provided to Vietnam hemophilia patients as follow: Equipment North regionSouth Chapter (Hochiminh city) Quantity Crutches311243 Handrails for toilet003 Wheelchair520456 Mobile toilet120 9/22

10. Home equipment adaptation support project 10/22

11. Employment Project Budget: 5.000 Euro (122.000.000VND) 10 applications were approved by Project Committee of VHA. In December 2015, VHA have completed all administrative procedures. ContentsQuantity of applications Cows03 Pig01 Camera Lens01 Sewing machine04 Support open convenience store01 Total10 11/22

12. Thanks letter from patients 12/22

13. 13/22

14. VIETNAM GLOBAL ALLIANCE FOR PROGRESS (GAP) 14/22

15. GLOBAL ALLIANCE FOR PROGRESS (GAP) GAP is a 10-year healthcare development project, launched in 2003. Aims: Closing the gap in treatment between developed and developing countries in 3 contents: The number of people born with hemophilia and those who reach adulthood The estimated and actual number of people known with bleeding disorders The need versus the availability of treatment products 1 2 3 15/22

16. 6 key areas of bleeding disorders care 1. Support from government 2. Care Delivery 3. Medical Expertise and Laboratory diagnosis 4. Treatment Products 5. Patient Organization 6. Data collection and outcome research 16/22

17. GLOBAL ALLIANCE FOR PROGRESS (GAP) In 2015, The World Federation of Hemophilia (WFH) and IHS visited Vietnam 2 times: - 5/2015, assessment visit and working with Ministry of Health (MOH) about GAP. Meeting with the Ministry of Health 17/22

18. GLOBAL ALLIANCE FOR PROGRESS (GAP) In December 2015, the WFH and VHA have organized meeting to discuss with keys members about goals and steps for improving national hemophilia care in Vietnam after 4 years. 18/22

19. STEPS FOR DEVELOPING NATIONAL HEMOPHILIA CARE PROGRAME IN VIETNAM 1.Government support: Presents Goals after 4 years  Limited central or regional government resources allocated for hemophilia care.  The Ministry of Health participate in, supports, facilitates for national hemophilia care program. 19/22

20. Existed HTCs Expanding HTCs after 4 years PresentsGoals after 4 years  There are 7 HTCs  6 comprehensive hemophilia care center  01 centers have team work meet the requirements of comprehensive care.  Expanding at least 10 satellites -HTCs, 2. Care Delivery 20/22

21. 3. Medical Expertise 3.1. Laboratory Diagnosis: PresentsGoals after 4 years  The diagnosis of hemophilia only be done in big hospitals.  Diagnostic capacity of local hospitals is still limited  Provincial hospitals have basic laboratory diagnostic ability.  7 HTCs have vWD Assays and Inhibitor detection and participate in EQAS  DNA detection are centralizing in 2 HTCs (NIHBT and BTH) 21/22

22. 3.2. Medical Treatment PresentGoals after 4 years -95% patients on demand treated in hospital. -Home care is not available -Some case secondary prophylaxis -Few doctor trained in hemophilia - Home care available - Primary prophylaxis for severe patients <15. - All hematologist in hospitals trained in hemophilia - Education offered to general medical community 22/22

23. 4. Treatment Products PresentsGoals after 4 years Combination of domestic production (cryo, FFP) and some purchase of plasma-derived factor concentrates CFCs: + Supplied not adequately + Used: 0.1 iu/ capita + Available only in the big hospitals Combination of local production of and purchase of plasma-derived factor concentrates CFCs: + Supplied adequately, proper national tender system + Used: 0.5 – 1 iu/capita + At least 17 hospitals (HTC) have CFCs 23/22

24. 5. Patient Organization -Goals after 4 years:  Outreach to detection 1.000 new patients.  Establish 10 new Branches, Clubs, Groups of patients base on HTC.  Patients are more active in the association's activities.  National organization is a partner in national hemophilia care program. 24/22

25. 6. Data collection and outcome research PresentsGoals after 4 years -Registry program only for single HTCs -National registry program for all identified patients with bleeding disorders -Design and conduct observational studies on bleeding disorders -Participate in multi-center comparative research on people with bleeding disorders (if possible) 25/22

26. Thank you for your attention! 26/22