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Organ Transplantation is one of the most remarkable advances in the history of medical sciences and provides a ray of hope to the thousands of patients suffering from organ failure with a new lease of life through a life-saving organ ( Ref). Despite of the advancement in medicine and technology, the availability of organs remains a major impediment and the demand outweighs the supply of the organs ( Ref).

The first formal successful Indian network of sharing of organs called Indian Network for Organ Sharing (INOS) was promulgated by a Non-Governmental Organization body called MOHAN in the year 1999 with six hospitals joining the network in Tamil Nadu.

The deceased donation programme in India is currently confined to several parts of India and is especially concentrated in Southern and Western part of India including the states Tamilnadu, Kerala, Andhra Pradesh, Telangana, Karnataka, Maharashtra and Gujarat ( Ref). In the central region it is gaining momentum in Delhi-NCR, Punjab, Haryana and with the new entrant Rajasthan. The eastern and central parts of the country are yet to join the movement.

It is estimated that India’s deceased organ donation rate is .. per million population for the year 2014 and it is believed to be the best year so far for deceased organ donation with a total of '''….organs retrieved from …. multi-organ donors (Ref- ITN -43 Feb 15)'''. The overall potential of organ donation from brain dead patients in India is extremely high. With increasing density of motor vehicles and poor implementation of traffic regulation, the number of fatal deaths due to road traffic accidents in recent years has increased and exceeds 160,000 deaths per year. It is estimated that in 70% of such deaths occur due to brain death.

Deceased Donation & Transplantation in Andhra Pradesh & Telangana
Erstwhile Andhra Pradesh (now divided into Telangana & Andhra Pradesh) was the fifth largest state in India & is the biggest and most populous state in South India with an estimated total population of Andhra Pradesh as per 2011 census is 84,580,777 of which male and female are 42,442,146 and 42,138,631 respectively with a literacy rate 67.66 There are 508 hospitals, 1,634 primary health centers and 170 dispensaries in erstwhile combined state of Andhra Pradesh with 9,726 doctors (including contract doctors) with 45,509 beds.

Parliament had enacted the Human Organs Transplantation Act, 1994 with the objective of promoting and regulating the transplantation of human organs like kidney, liver and heart - both live as well as cadaver. The Legislative Assembly of Andhra Pradesh adopted the aforesaid Central Act in the form of Andhra Pradesh Transplantation of Human Organs Act, 1995. In 2003, Indian Network of Organ Sharing (INOS) with its success in Tamil Nadu was extended to erstwhile Andhra Pradesh by MOHAN with 10 networked hospitals participating in the programme (Ref). The mission statement of INOS was “Let No Organ Be Wasted” and it successfully established the fact that organ sharing was the way forward for the deceased organ transplantation programme (Ref). Graph 1 - INOS Figures 2010-2014 ( Ref- mf website)

There were a total of 1033 organs and tissues that were shared (as seen in table below) consisting of 449 kidneys, 86 livers, 29 hearts, one pancreas, 16 heart valves, and 452 corneas being distributed and transplanted in various hospitals among the INOS network in Tamil Nadu and erstwhile Andhra Pradesh.

Despite passing of the act and rules by the legislature and government, there was no streamlined structure of sharing of organs or mechanism that was developed by the government. In 2009, the Government of Andhra Pradesh appointed a high level advisory committee called Cadaver Transplantation Advisory Committee (CTAC) that came out with recommendations for streamlining procedures for cadaver transplantation and evolve mechanisms for coordination of deceased organ donations and transplantations, create a registry of donors and potential recipients, design guidelines for allocation of organs, and make recommendations on creating an organizational structure for cadaver transplantation. The CTAC after studying the existing system, came up with a suggestion of starting organ sharing network under the government and also a new comprehensive scheme called "Jeevandan" connoting “donation of life” to give a boost to the organ transplantation and designated Nizam’s Institute of Medical Sciences as the nodal center for the AACT (Appropriate Authority for Cadaver Transplantation) as the legal entity with statutory powers under APTHOA 1995.

A virtual coordinating mechanism, APNOS (Andhra Pradesh Network for Organ Sharing), with necessary infrastructure and governance structure registered as a society consisting of members from AACT as its governing body, registered hospitals and NGOs as ex-officio members of the society were formed to provide services to donors, recipients, hospitals, and general public. NGOs were intended to participate in training, counseling, awareness, and for providing financial aid to the deserving registered patients under the scheme.

Though the Jeevandan Scheme was recommended by the CTAC in 2010, it took about three years for it to become active and fully functional till January 2013 with APNOS established to act as coordinating mechanism with a portal ( www.jeevandan.gov.in ) that provides information and alerts to all appropriate persons on a real-time basis to facilitate cadaver organ harvesting and transplantation.

The APNOS (Andhra Pradesh Network for Organ Sharing) currently consists of 28 hospitals within its network spread across the three regions of Andhra, Telangana and Rayalaseema with three public sector hospitals in the network (NIMS & Osmania General Hospital in Hyderabad and SVIMS in Tirupati). The network consists of majority of hospitals in Telangana region (Hyderabad) with 18 hospitals followed by Visakhapatnam with five hospitals, two hospitals each in Guntur and Vijayawada and only one hospital in Rayalaseema region (Tirupati).

There is a consistent rise noticed in the number of donations in erstwhile Andhra Pradesh from 2002 to 2014. There is a significant rise in donations noticed in 2013 and 2014 with the government initiated network of 14 hospitals in the APNOS network. (see Graph 2) Graph 2 - Organ Donors in Andhra Pradesh from 2002 to 2014

The Tamil Nadu model of public-private-NGO partnership has resulted in an organ donor rate of … per million population, which is 8 times the national average of … per million population (2013). The key factor in the success of the programme in Andhra Pradesh has been the coming together of government policy and the involvement Jeevandan, the private sector hospitals and NGOs like MOHAN Foundation.

Challenges in Deceased Donation Programme in Andhra Pradesh & Telangana
The Government of Andhra Pradesh was successful in creating an enabling environment to promote deceased organ donation with a network of 14 hospitals and pool of doctors that can certify brain death to a larger extent in private hospitals but it has a long way to go in public hospitals. This transition was possible because of the previous foundation laid down by INOS sharing network and also the APNOS network did a commendable job in doubling the number of hospitals to 28 in a span of two years ( Ref).

With the division of erstwhile Andhra Pradesh into Telangana and Andhra Pradesh states, a new network has been initiated recently in the state of Andhra Pradesh with NTR University as the nodal center for promoting organ donation. ref(10)

Graph 4 shows that 78% of donations happened in the North Zone (Telangana region) and all the networked hospitals are based in Hyderabad. The contribution of the hospitals from East Zone was 13%, Central Zone was 8% and South Zone with 1% donations. While this is a challenging task to begin with for both the states as in Telangana state there is concentration of network hospitals in Hyderabad and in Andhra Pradesh there are less number of donations noticed ref(11). However, this can be an opportunity for both the newly formed states in building a successful sharing network. Graph 4 – Donors by Zone in erstwhile Andhra Pradesh 1. Improving donation rate

Erstwhile Andhra Pradesh was the leader in deceased organ donation and transplantation programme along with Tamil Nadu until 2008. After this Tamil Nadu lead the movement with the strategic move of building an organ sharing network of 52 hospitals (all government and private hospitals) along with NGO’s like MOHAN & NNOS and this resulted in organ donation rate of 1.18 per million population. There is a huge gap observed between Tamil Nadu and erstwhile Andhra Pradesh with donation rate of 0.55 per million population (see Graph 5).

Graph 5 - Organ Donations in Erstwhile Andhra Pradesh & Tamil Nadu from 2008 to 2014

The two newly formed states should work on bringing in more hospitals into the network. Currently, there are 14 hospitals in the network of Telangana state with three public/government hospitals. However, there is only one public hospital in the network of newly formed Andhra Pradesh and all the other hospitals are from private sector. Including more public hospitals into the network and placement of trained transplant coordinators that help in converting death into saving lives to assist in deceased organ donation programme for counseling of family members of brain dead persons is the key to the success of the program.

The presence of transplant coordinators and grief counselors in hospitals where more trauma cases are reported will increase the donation rate and help patients get a life-saving organ. This has been explored by the Government of Tamilnadu by placing transplant coordinators and grief counselors of MOHAN that demonstrated a conversion rate of 66% (146 families were counseled and 97 families agreed to donate) success in donations in Rajiv Gandhi Government General Hospital (February 2013 to September 2013). (Ref) The government of Telangana has permitted transplant/grief counselors of MOHAN to work at Osmania General Hospital & Gandhi Medical College & Hospital since December 2014 as a pilot project to learn from the experience and initiate a strategy for the way forward in implementing transplantation programme in government hospitals across the state of Telangana.

2. Success and Conversion Rate

From January 2006 to December 2012, there were a total of 150 cases that were counseled and out of which 118 families agreed to donate depicting a success rate of 80% by the trained counselors of MOHAN. The conversion rate steadily increased from 10% in 2002 to 80% in 2011. ref(12).

Graph 7 – Counseled and Donations Status 2006-2012 by MOHAN

From January 2013 to December 2014, the methodology of grief counseling by the recipient transplant coordinator as the counselor was adopted in majority of hospitals in the APNOS network and has resulted in 101 successful donations till date. All Indian Institute of medical Sciences in Delhi reports an average donation rate of 10-12 cadaver donations each year with conversation rate of 12 in 2013 and is hoping to see better conversion rate in the future. ref(13)

3. Increasing and Sustaining Public Awareness

A large amount of population is not aware of the concept of brain death in India. It becomes cumbersome to the counselors making the family aware of possibility of organ donation and asking for a decision during the time of grief.

It is also clearly evident from the experience of massive number of awareness programs on eye donation over the last decade has now resulted in an increase in the number of voluntary eye donations across India. Two states Andhra Pradesh and Tamil Nadu have reported about 20% increase in collection over 2007. Interestingly in Andhra Pradesh and Tamil Nadu both HCRP (Hospital Cornea Retrieval Program) and voluntary collections are on the rise. North Zone’s performance has been phenomenal, reporting an increase in collection by 42% over 2007. ref(14)

Graph 8 – Public Education & Sensitization Programmes by MOHAN

MOHAN has been a front runner in organizing constant public awareness campaigns in the form of sessions, interactions, stalls, rallies, marathons, fashion shows, flash mobs, transplant games, fests, etc. to spread awareness and has successfully conducted a total of 252 awareness programmes from 2012 to 2014 in Andhra Pradesh and Telangana (Ref).

MOHAN is also engaged in conducting one-day sensitization programs for other hospital staff on their role in deceased organ donation. It conducts workshops on a regular basis for transplant coordinators across the country providing a common platform to share their experiences and adopt best methods to increase donations. It has conducted four workshops and 18 sensitization programs with more than 1000 participants in Andhra Pradesh and Telangana since 2012 to 2014 (Ref).

In erstwhile Andhra Pradesh, it has trained a total of 122 candidates from 2010 to 2014 with 77, 19 and 26 candidates respectively in Hyderabad, Visakhapatnam and Vijayawada. ( Ref)

Graph 8 – Candidates Trained by MOHAN 4. Recipient Support and Assistance:

To rescue the poor patients, the government is also taking steps to provide medical cover up to Rs. 3.3 lakh for kidney transplantations under Rajiv Arogyasri, unique community health insurance scheme in Andhra Pradesh and Telangana, as patients suffering from kidney diseases were spending more than Rs. 2 lakh a year on treatment alone. ref(15) A successful organ donation movement is a culmination of active participation of government, public, medical fraternity and civil society organizations. There is a clear need for further collaboration between the government and NGOs in the areas of public awareness, donor registry, grief counseling and training aspects that can be passed on to NGOs. All the recipient related aspects like maintenance of registry of recipients, distribution of organs and coordination with hospitals in the sharing network should be carried out by the government. There is also further need of sharing of the resources like “National Organ Donation Helpline” by displaying it on the official website and also promoting the same. A collaborative approach with consensus building among the stakeholders will result in better planning and improved outcomes.

Figure 1 - Role Sharing of Government & NGOs in Deceased Organ Donation