National Organ and Tissue Transplant Organization (NOTTO) is a National organization under Directorate General of Health Services, Ministry of Health and Family Welfare. It is the apex body
for coordination and networking for procurement and distribution of Organs and Tissues and registry of Organs and Tissues Donation and Transplantation in India. There is a wide gap between patients who need transplants and the organs that are available in India. An estimated around 1.8 lakh persons suffer from renal failure every year, however, the number of renal transplants done is around 6000 only. An estimated two lakh patients die of liver failure or liver cancer annually in India, but only about 10-15 per cent of these can be saved
By Team IMT
Dr Vasanthi Ramesh, Director, NOTTO with a timely liver transplant. In fact, about 25000-30,000 liver transplants are needed annually in India but only about 1500 are being performed. Similarly, about 50000 people suffer from heart failures annually but only about 10 to 15 heart transplants are performed every year in India. In case of cornea, about 25000 transplants are done every year against a requirement of one lakh.
The 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 actively involved in enhancing organ transplant to save lives in India.
Here Dr Vasanthi Ramesh, Director, NOTTO talks about the challenges of running a national level organ donation network and the role of Notto in the success of transplant programmes in India State of organ donation and transplant in India In the last 25 years the awareness regarding organ donation has come a long way. Now, families respond very well to the counselling in brain death cases and the living donor programmes are also seeing a larger acceptance in the community. In 2020, there were around 400 brain stem dead donors, 5800 living organ transplants and 900 deceased organ transplants. The annual figures for transplant based on organs are encouraging. There were about kidney ~ 5000, liver ~ 1500, heart ~ 80, lungs ~ 60, pancreas ~ 20 and six for small bowel. Around 1500 transplants were done in the southern region, around 950 in the western region. Delhi-NCR had about 1850 transplants, northern region had around 890, eastern region had around 400 and north-eastern region had 12 transplantations.
However, the transplant numbers have reduced in the last year due to the COVID-19 pandemic. Initially, as per the COVID-19 training guidance, no elective transplants were allowed. Later, it was changed and allowed as social restrictions were lifted. The transplantation numbers had gone down by 46.19 per cent since the previous year, but off late transplantation numbers are picking up again and is regaining momentum.
The role of Notto
Let me take you back to 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 realtime data of donors, recipients, and transplants in the National Organ and Tissue Transplant Registry (NOTTR) from all transplant and retrieval centres.
However, NOTTO succeeded in collecting data offline from all 29 states and seven union territories and submitted to World Health Organization– Global Observatory on Donation and Transplantation in 2019. I’m happy to note that there was a greater than two-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 US.
Notto and tissue transplant
The Transplantation of Human Organs (Amendment) Act 2011 included the component of tissue donation and registration of tissue banks. Subsequently, a national level tissue bank to fulfill the demands of tissue transplantation was instituted. Its activities included procurement, storage and distribution of biomaterials.
The centre takes care of the following tissue allografts
o Bone and bone products e.g. deep frozen bone allograft, freeze-dried bone allograft, dowel allograft, AAA Bone, Duramater, facialata, fresh frozen human amniotic membrane, high temperature treated board cadaveric joints like knees, hips and shoulders, cadaveric cranium bone graft, loose bone fragment, different types of bovine allograft, used in orthodontics
o Skin graft
o Heart valves and vessels
The call centre in NOTTO informs people about cornea donation and about facilities for tissue retrieval and networks. Also, the call centres carries out calls and helps in facilitating the tissues removal from the institution closest to the donor’s residence.
Well it has been challenging and rewarding experience at the same time. So far we have streamlined networking organisations of NOTTO, ROTTO and SOTTO registry. In addition, we ran a drive to ensure that all the hospitals register as NTORC; and tissue banks, transplant centres are registered with the national registry at NOTTO. All states and institutions are requested at periodic intervals to ensure uploading of data such as registration of patients on the waiting list, donors and transplants are done. Transplant professionals are constantly requested to upload the follow up of the donors and recipients; however there is resistance to this activity. Nevertheless, our effort is ongoing. To achieve this, to enable compliance with the THOTA Act and rules, NOTTO is leaving no stone unturned. NOTTO as an organisation and its employees have received awards felicitating their contribution in the field of organ donation and transplantation in India. Notably, the present Director of NOTTODr. Vasanthi Ramesh was honoured as Unsung Hero Awardee in 2020 from The Transplantation Society (TTS), which again was a big achievement on the forefront of transplantation activity in terms of international recognition.
Some of the programmes initiated in the last couple of years are:-
- Training of intensivist/anaesthesist/ neurologist/neurosurgeon was conducted by NOTTO during CAST 2019, with international and national faculty. Doctors from across the country were trained in this course.
- Retrieval workshop for surgeons were also conducted where surgeons were trained for retrieval of kidney, heart, lung and liver.
- Propose to upgrade the NOTTO webportal and national registry to bring it on par with registries of developed countries.
New arenas to explore
It would be wonderful if NOTTO could be transformed into a transplant university or Indian Institute for Transplant Research on the lines of ICMR and be established as an institute of national importance having been created as a mandate of THOTA 1994 similar to AIIMS, PGIMER and JIPMER. Similar autonomy could go a long way in establishing this institution.
The future lies in the training of intensivists to function as leaders of transplant coordination so that no brainstem death patient goes undetected. The required request as per the act is to be fully implemented and the organs thus harvested from the consented donors are fully utilised for the welfare of mankind. It is also proposed to have more training programmes for surgeons to enable the availability of adequate manpower for performing transplants, training of pathologists, neurologist, microbiologists to upgrade the investigational modalities which are mandatory for transplant procedures and last but not least – the training of transplant coordinators (TCs) who form the backbone of the activity at the initiating level.
What does NOTTO do
- Lay down policy guidelines and protocols for various functions.
- Network with similar regional and state-level organisations.
- All registry data from states and regions would be compiled and published.
- Creating awareness, promotion of deceased organ donation and transplantation activities.
- Co-ordination from procurement of organs and tissues to transplantation when organ is allocated outside region.
- Dissemination of information to all concerned organisations, hospitals and individuals.
- Monitoring of transplantation activities in the regions and states and maintaining data-bank in this regard.
- To assist the states in data management, organ transplant surveillance and organ transplant and organ donor registry.
- Consultancy support on the legal and non-legal aspects of donation and transplantation
- Coordinate and organise trainings for various cadre of workers