How can we Improve Organ Procurement and Sharing?

1. How can we Improve Organ Procurement and Sharing?  Sunil Shroff Managing Trustee Multi Organ Harvesting Aid Network CHENNAI, HYDERABAD, PUNE HOD & Prof. Dept of Urology & Renal Transplantation Sri Ramachandra Medical College & Research Institute, Chennai

2. TRIBULATIONS & TRIALS OF CADAVER TRANSPLANTS IN INDIA • In past decade approx. 1100 Cadaver transplants (mostly kidneys) have been performed • No lack of “Brain Dead” organ donors in any of the major hospital in our country • Consent is often given for all organs but due to lack of proper infra-structural support system (like networking with different regions) only a couple of organs are utilised

3. TRIBULATIONS & TRIALS OF CADAVER TRANSPLANTS IN INDIA Main reason for failure of “Transplantation of Human Organ” Act is due to “CONVERSION FAILURE” of Brain Dead patients in the hospitals who actually become organ donors Definition of Conversion failure: FAILURE TO CONVERT A POTENTIAL BRAIN DEAD ORGAN DONOR TO ACTUAL ORGAN DONOR - IRRESPECTIVE OF THE CAUSE OF THE FAILURE

4. Poor Conversion Rate of Brain Death Patients In Chennai with a population of over 6 million, there are on an average 400 to 500 “Brain Deaths” in a year. Of these only 25 to 30 (less than 10%) go on to become actual organ donors. At Ramachandra Hospital the conversion rate is about 19% Brain Death Forms –1% to 2% of Total Hospital Death

5. For Giving Momentum to Cadaver Programme • Some serious introspection required by - • Transplant clinicians • Other Medical professionals • Government officials • State health departments • NGO’S • Law department Cadaver transplant programme success can do away with the need for unrelated donations

6. The Complex World of Organ Donation & Transplantation IMMUNOLOGICAL ISSUES – Immunologist ETHICAL & MORAL ISSUES Philosophers SOCIAL ISSUES – Society & Social Scientists MEDICAL ISSUES - Physicians SURGICAL ISSUES - Surgeons Legal Issues – Govt. & Lawyers ORGAN REGENERATION - Basic Scientists RELIGIOUS ISSUES – Religious Heads Media & Publicity – Newspapaers, Ad agencies. TV DRUGS for immunosuppression – Pharmacist & Pharmaceuticals

7. Mission Statement – INOS Group of MOHAN Foundation “ORGANS SHOULD BE TREATED LIKE NATIONAL RESOURCES AND NOT TO BE WASTED” All State Governments should issue a Government Order to this effect

8. What is Required • Indian Network for Organ Sharing – INOS A Centralized Organ Donation and Transplantation Network • Streamlining of Organ Donation Process • Co-ordinators Forum for Transplants

9. Indian Network for Organ Sharing

10. Country wide Networking of Hospital doing cadaver transplants • MOHAN (Multi Organ Harvesting Aid Network – Tamil Nadu and Andhra Pradesh • ZTCC- Maharastra • ORBO & Others in Delhi • FORTE – Bangalore • SORT – Cochin • Ahembadabad MOHAN Found has written to major hospitals from different states to work closely together and form affiliations with each other

11. Indian Network for Organ Sharing C0NSTITUTION - • One Medical and Government Representative from each region or state on the committee • One Representative from each of the NGO’s • Organisation independent of Government • Organisation function purely as an independent body MOHAN Foundation will work towards making it happen in the first 3 to 5 years

12. Indian Network for Organ Sharing RESPONSIBILITY Have a common platforms for all organs (Eyes , Kidneys, Liver, Heart, Lungs, Pancreas, Bone, Cartilage, Skin ……) MOHAN Foundation has written to Eye Bank of India to have some common areas of expertise sharing

13. Indian Network for Organ Sharing FUNCTIONS • Apex decision making body - • devising organ sharing national criterias • organ allocation • standardising retrieval techniques, • dialogues with government • Meets once or twice in a year for a day or two (can club it with ISOT meeting dates) • Work like a virtual network

14. Indian Network for Organ Sharing FUNDING • Contributions from Each member organisation • Project Grants • Corporate and Public members can pledge money for this purpose MOHAN Foundation can allocate initial funds to make it happen

15. Centralised Organ Sharing Registry • Creation of a centralized System to share information - first step to share organs • MOHAN Foundation has fine-tuned a web based software for Solid Organ sharing in Tamil Nadu

16. Advantages of Sharing • Organs not wasted • Good PR exercise for Hospitals • Larger pool of Recipient. Hence patient gets the best matched Organ with better long term results • Regular supply of organs • Protects the programme from scandals and legal complications • Public and Govt. Approves

17. Advantages of Sharing At MOHAN Foundation in the last four years at least Two medico-legal cases have been diffused – • In one case husband accused hospital of making money by using wives organs, when he was told organ shared he didn’t proceed • In another – A complaint lodged that a recipient had issued an appeal among his bank colleagues to donate money to buy a kidney. However he had recd a cadaver organs from another hospital and no money had been charged for it hence case had no basis

18. COMPUTERISED ORGAN SHARING NETWORK OF MOHAN • AIM • Donated Organs should be treated as national health resource and no organ should be wasted. • Organ sharing Network may help in curbing this wastage • From 1995 – 2001 - 166 solid organs wasted

19. What is Required • Indian Network for Organ Sharing – INOS A Centralized Organ Donation and Transplantation Network • Streamlining of Organ Donation Process • Co-ordinators Forum for Transplants

20. How can we improve organ sharing? • Centralized Registry of Recipients for all organs to help in a Countrywide Networking of Hospital doing cadaver transplants • Streamlining of Organ Donation Process • Strong Co-ordinators Forum Better Integration among various Groups promoting Cadaver Transplants in the Country

21. Streamlining of THO ACT • “Required request Law”- Make it compulsory for doctors or medical social workers to ask for Organs in a Brain Dead Situation • “Mandated Choice” During issue of Driving License for organ donation • “De-link hospitals”. Hospitals should not require certification for organ retrieval surgery Indian Transplant Newsletter Issue 11 of Feb 2002 had a Postcard that doctors could fill to recommend these inclusions to the Govt of India

22. Pitfalls - THO ACT • Donors • Scrapping of Sub Clause (3) , Clause 9 of Chapter II • If any donor authorizes the removal of any of his human organs before his death under sub-section (1) of section 3 for transplantation into the body of such recipient, not being a near relative as is specified by the donor, by reason of affection or attachment towards the recipient or for any other special reasons, such human organ shall not be removed and transplantedwithout the prior approval of the Authorization Committee. Majority of Live kidney transplants patients in the country use this clause resulting in “ Legal Commercialization of kidneys”

23. What is Required • NGO or Groupsinvolved in Organ donation in any part of the country have to tackle various issues in the field of organ donation and transplantation simultaneously • More Support groupsin the Country with common objectives are needed • More visibility -“Goodness in the cause of organ donation”in Media rather than“Organ scandals” needed • Project success storiesof Multi-organ donation and transplantation in media to neutralise the adverse publicity that keeps coming up • More resourcesnecessary to Kick start such an Initiative

24. Has Current system done enough to encourage charitable organ gifts!! • Improving Hospital PR skills - experiences of families contribute significantly to decision of donating or not. Families that opt not to donate also tend to be less satisfied with the quality of care received while in the hospital and also have a poor understanding of brain death

25. Increasing organ donation rates • Non heart beating donors • Choice of some indirect benefits - to donor families • Creating Synergy-Higher success when intensive care unit and organ procurement organization staff work together • Donating to third party -In situations where family member wiling but no match. Make an exchange donation to a third party who is in similar situation

26. What is Required • Indian Network for Organ Sharing – INOS A Centralized Organ Donation and Transplantation Network • Streamlining of Organ Donation Process • Co-ordinators Forum for Transplants

27. Transplant Co-ordinators Forum • At present less than 12 to 15 fully or partly Trained Transplant co-ordinators in the country • Decision taken at the 24th INOS meet to help in starting such a forum under the Foundation and if necessary this group can attain Independent status in future • Two meeting of the Forum has been held • Mrs.Lalitha Raghuram made in charge of the Forum

28. Improve “Conversion Rate” • Transplant coordinator in all Major ICU’s • Grief Counsellor’s in all Major ICU’s • Counselling for all organs essential MOHAN Foundation has been granted 100% Tax exemption from Govt of India for donation to implement round the clock counselling by social workers or Transplant Co-ordinators in ICU’s in 10 cities

30. CONCLUSION • In India, majority of cadaver organs are wasted and it is likely to be the same over the next few years. • Creation of a Centralized Organ Sharing Network to share organs - net-working can overcome problem of organ wastage • MOHAN has taken the first step in trying to Network with other organization and have a web based software for Organ Sharing • Some minor amendments and additions in THO Act required • Organ Donation can be streamlined without any cost to the Govt • A collective effort required to tackle the issues- NGO’s on their own cannot make this happen

31. Our Mission Statement “ORGANS WASTED ARE LIVES LOST” This presentation has been created using 100% recycled electrons!! Recycle yourself and become an organ donor THANK YOU