TWINNING

1. TWINNING

2. WFH World Federation of Hemophilia • Founded in 1963 • 88 countries • Mission-advance services worldwide for people with hemophilia (approx. 400,000 people worldwide – 75% receive little or no treatment)

3. WFH • WFH programs 1. Humanitarian aid – Donated 26.6M units of factor to 64 countries in 2013 2. Data collection – global survey 3. Public policy – Committee on Blood Safety and Availability – watchdog on different safety issues

4. WFH 4. Publications - Lab manual, Facts and Figures 5. Twinning

5. Twinning A formal 2-way collaboration between an established and an emerging center that benefits both twins • Started in 1994 • Four year commitment • Two types of twins • Hemophilia treatment centers • Hemophilia organizations

6. Twinning Established center offers expertise, experience, resources • Improve diagnosis and care delivery • Minimize complications to improve quality of life • Strengthen elements of a national hemophilia care program

7. Twinning • Raise the profile of the emerging treatment center • Encourage collaboration, build relationships • Build a global movement

8. Twinning By 2013 • Total 116 medical twins and 65 organizational/chapter twins Currently • 19 active medical twins, and 16 active organizational twins

9. HCWP Twinning How we started • MD assisting to establish sickle cell program in Tanzania approached medical director about twinning program • Staff interest very high • Treatment center support • Contacted WFH • Filled out initial questionnaire. • Conducted assessment visit - July 2013

10. HCWP Twinning How we started: • Submitted application to WFH • Approval – 11/13 • Submitted 2014 action plan – 12/13 • Education • Outreach activities • Goals • Budget • Outcomes • Monitoring • Evaluation

11. HCWP Twinning • Requested WFH funds • Funds approved – 2/14 • Additional funding requests

12. Reality in Tanzania No HTC in Tanzania Hemophilia care - Muhimbili National Hospital • Hematologists - 7 • Goal - gradually improve medical expertise by providing basic training • Lab – No diagnostic capacity No reagents – FVIII, FIX, vWF Coagulation instruments not serviced for 5 years Technicians lack basic training • Goal - provide accurate and reliable diagnosis, assist with creation of lab quality assurance program, advanced training

13. Reality in Tanzania • Blood bank – MNH only facility with capacity to collect, separate blood components Equipment available to produce cryoprecipitate but lack knowledge to order or infuse No factor products Supply of blood products unpredictable, scarce • Goal - Treatment of bleeds

14. Reality in Tanzania • Registry 63 registered hemophiliacs Population of Tanzania – 46.9M Should have 5,629 hemophiliacs • Goal – develop tracking system of identified patients • No treatment protocols • Goal – tools to provide treatment recommendations

15. Reality in Tanzania • Ministry of Health – No cost exempt status for hemophilia diagnosis • Goal – government acknowledgement/support of hemophilia as a chronic disease • Communication - Language barrier • Goal – educational materials in Swahili • No comprehensive care team in place • Goal – dedicated hematologists, orthopedist, nurses, physical therapists, social workers

16. Reality in Tanzania • National member organization – Hemophilia Society of Tanzania formed in 2009 • Goal – Work with the organizational twin from Ontario, Canada • Distance issues – 31st largest country in the world by area • Goal - Outreach

17. Twinning Assad Haffar, Regional Program Manager- Africa and Middle East “One of the most important accomplishments of Medical Twinning partnerships is the introduction of the comprehensive care approach and the importance of the role of the hemophilia nurse coordinator which is usually neglected in emerging countries….and the importance of physiotherapy in conserving joint functions during and after bleeds.”

18. Twinning • Susan Zappa – Nurse Coordinator, Cook Children’s Medical Center “You will touch lives as you never thought possible with doing so little.”