1. Thalassaemia and Hepatitis Vinay Shetty Vice President Think Foundation What we can do? 28July-WorldHepatitisDay

2. A facebook page What we can do? 28July-WorldHepatitisDay Name : Xxxxx Yxxxxx Age : 34 years Status : Married Children : 1 son (5 years old) Works at : XYZ Corp. Studied at : Xxxx Inst. Of Mgmt. Interests : Reading and cricket 3. Who is this ? What we can do? 28July-WorldHepatitisDay Xxxxx Yxxxxx is a Thalassaemia Major 4. What did he do right ? What we can do? 28July-WorldHepatitisDay Blood transfusion Pre-transfusion Hb > 9.5 gms/dl Iron chelation Serum Ferritin < 1000 ng/ml Periodic monitoring LFT, RFT, Thyroid, TTIs, Growth, DEXA, MRI 5. What did others do right ? What we can do? 28July-WorldHepatitisDay Transfusion Service Ensured availability of blood Nucleic Acid Amplification Testing Ensured supply of safe blood Health Care system Ensured availability of medicines Provided facilities for monitoring 6. Hepatitis in Thalassaemia patients What we can do? 28July-WorldHepatitisDay Around 10 % of Thalassaemia Major patients infected with Hepatitis C Infection due to transfused blood carrying the virus Mandatory Hep C testing only after 2002 Large Window period in current methods Risks higher for Thalassaemia Major due to being multiple-transfused 7. What we can do? 28July-WorldHepatitisDay What should we do ? For general well being Maintain Hb > 9.5 gms/dld Maintain Se Fe < 1000 ng/ml Check all parameters periodically prepare patient management book and provide to all centres work with the health department to provide iron chelators work with sponsors to adopt patients for iron chelation draw up a centre-wise systematic plan to follow protocol laid down by TIF 8. What should we do ? What we can do? 28July-WorldHepatitisDay Ensure Safety of Blood Collect blood from voluntary donors Employ better testing systems for TTIs For prevention Organize blood donation camps Advocacy for implementation of National Blood Policy Advocacy with Health Ministry/ Drugs Controller/NBTC/Blood Banks for NAAT testing of collected blood 9. What should we do ? What we can do? 28July-WorldHepatitisDay For treatment Early detection Determination of type Resources for treatment Arrange for Serology tests every 6 months Select patients for treatment determine genotype and viral load Interact with pharma cos. and health authorities for making treatment affordable Ask health authorities to take responsibility for treatment Raise resources through sponsors 10. What we can do? 28July-WorldHepatitisDay Grateful to Childrens Liver Foundation All amazing doctors who take care of thalassaemia patients Blood Banks Sponsors 11. What we can do? 28July-WorldHepatitisDay Thank You 12. Blood Banks therefore regulated under Drugs Cosmetics Act, 1940 and rules thereunder. Human Blood covered under the definition of Drug. 1940 13. 1989 Notification by Central Govt. under Drugs Cosmetics Rules for mandatory testing for HIV Following Reports of AIDS 14. 1990 Drugs rules amended, and Drugs Controller General of India vested with the power of Central Licence Approving Authority Following Fergusson Report 15. 1992 Public Interest Litigation filed by Mr. H.D. Shourie 16. 1996 Consequent to P.I.L., Supreme Court of India gives directive to the Govt. of India to: ban commercial/paid donors formulate comprehensive legislation on blood transfusion services. form National and State Blood Transfusion Councils 17. 1996 Govt. of India directs Drugs Controller General of India to formulate comprehensive legislation In line with Supreme Court directives 18. 1996 Establishment of Committee headed by Dr. Mukherjee to study possibility of Red Cross running the transfusion service Existing Red Cross network found to be inadequate 19. 1996 Establishment of Committee to formulate National Blood Policy In line with Supreme Court directives 20. 1996 Formation of National Blood Transfusion Council Registered as a Society In line with Supreme Court directives 21. 1996 2nd July Formation of Maharashtra State Blood Transfusion Council Regd. Under Societies Registration Act, 1860 on 22nd Jan., 1997 Regd. Under Bombay Public Trusts Act, 1950 on 17th April, 1998 In line with Supreme Court directives 22. In line with Supreme Court directives National Blood Policy published by Govt. of India 2002 23. In line with Supreme Court directives Action Plan formulated for National Blood Policy 2003 24. National Blood Policy Objective 1 To provide safe and adequate quantity of blood, blood components and blood products. The Policy Objective mentions : ..the practice of replacement shall be gradually phased out 25. National Blood Policy Objective 2 To make available adequate resources to develop and reorganize the blood transfusion service in the country. 26. National Blood Policy Objective 8 To take adequate legislative and educational steps to eliminate profiteering in blood banks. The Policy Objective mentions : ..as a deterrent to paid blood donors who operate under the guise of replacement donors, institutions who prescribe blood should be made responsible to organize blood for their patients 27. As per National Blood Policy Structure of Transfusion Service N.B.T.C . S.B.T.C./U.T.B.T.C . Red Cross Blood Centre NGO Blood Centre Govt. Blood Centre Satellite Blood Centre R.B.T.C. N.B.T.C. : National Blood Transfusion Council S.B.T.C. : State Blood Transfusion Council U.T.B.T.C. : Union Territory Blood Transfusion Council R.B.T.C. : Regional Blood Transfusion Centre 28. As per National Blood Policy Organizations supporting Transfusion Service NACO National Aids Control Organization to allocating budget to NBTC DCGI - Drugs Controller General of India To establish and enforce standards for blood and blood products Ministry of Health & Family Welfare To lay guidelines on bio-safety for all Blood Centres 29. As per National Blood Policy Problems - Macro NBTC, being a Council and not an Authority, can only recommend. Legislative action to be taken for implementation of National Blood Policy 30. As per National Blood Policy Problems on the ground The practice of replacement donor continues Hospitals refuse to take blood from a blood bank, and insist on donors being brought to the Hospital. Too many blood banks, each charging different processing charges 31. The solution One single metropolitan blood bank catering to the city, and maintaining independence from hospitals for blood banking operations Will think of the citys requirement Uniformity of collection/processing Collection from voluntary donors Will ensure 100% components 32. 100% Voluntary Blood Donation - Mumbai By testing of blood alone can we ensure that blood is safe? Window Period is a serious threat No 33. 100% Voluntary Blood Donation - Mumbai How do we ensure that blood is safe ? By collecting blood from safe donors 34. 100% Voluntary Blood Donation - Mumbai Who is a safe donor? A voluntary donor is safe donor 35. 100% Voluntary Blood Donation - Mumbai Who is a voluntary donor? A person who donates blood without knowing the identity of the recipient