Why NOTTO? The National Organ and Tissue Transplant Organisation and Why It Is Crucial to Regulate Organ Donation and Transplantation in India

Abstract

ObjectivesThis study addresses the establishment of the National Organ and Tissue Transplant Organisation (NOTTO) and its impact on organ donation and transplantation in India. MethodsYearly data, 2013 to 2018, from all the states and union territories of India as per the World Health Organization–Global Observatory on Donation and Transplantation (WHO–GODT) format, were analyzed and tabulated. The various national and international legislation, advisories, and reports that mandated establishment of national regulatory bodies were studied. Comparisons were drawn, noting points of similarity and contrast between analogous organizations. ResultsIn the WHO Madrid Report 2004, the international advisory highlighted the need for a national transplantation agency for effective integrated development of donation and transplantation. Its parallel in India was the 2011 Amendment of the Transplantation of Human Organs Act 1994 to set NOTTO up with its first director in 2014, and also with a national donor and recipient registry to achieve transparent allocation. A challenging task for NOTTO was to collect from all transplant and/or retrieval centers their real-time data of donors, recipients, and transplants in the National Organ and Tissue Transplant Registry (NOTTR). However, NOTTO succeeded in collecting data offline from all 29 states and 7 union territories and submitted to GODT in 2019. There was a greater than 2-fold increase of deceased organ donors from 340 in 2013 (pre-NOTTO) to 875 in 2018 (post-NOTTO). The deceased organ donation rate went up from 0.27 to 0.65, and the total number of transplants went up from 4990 to 10,340 in the same period. All the outcome measures doubled or tripled, establishing the role of NOTTO. Albeit having differences, NOTTO is analogous to the National Transplant Organization of Spain and United Network of Organ Sharing of the United States. ConclusionThe 2011 Amendment of THOA 1994 provided the basis for the establishment of NOTTO, which has been crucial in regulating organ donation and transplantation in India with the setting up of the NOTTR in 2015. NOTTO has been instrumental in augmenting all outcomes.