Executive Summary

This "pro bono publico" iinitiative has stemmed from the long professional experience of two senior surgeons, who have observed with concern, a serious and ever widening Demand-Supply gap between the organs available for donation and the demand for organ transplantation. Unfortunately, the Northern India has lagged behind in the cadaver organ donations, even though there are many approved organ transplant centers available. The promoters want to do everything possible, in a structured manner to bridge this gap. Its importance is apparent also from the fact that our Prime Minister, in the October & November 2015 edition of the popular radio program, "Mann Ki Baat", highlighted the need for increasing the organ donations.

Organ Transplantation

Organ Transplantation is one of the greatest achievements of modern medicine. Allo transplantation ie transplantation of living organs, tissues or cells from one human to another or between individuals within the same species, includes organs like kidney, heart, lung, liver & pancreas or tissues like bone marrow, bone, heart valves, eye tissues or skin.

Xeno transplantation is the transplantation of living organs, tissues or cells from one species to another (pig being the most common) and is viewed as a potential solution in view of the shortage of human organs for transplantation. This concept of xeno-transplantation is still in the pre-clinical stage and not yet available for use in humans. The story of Lord Ganesha (and some other religious stories) signify that in Hindu mythology, the idea of Xenograft is an age old concept. Though Xeno transplantation has many scientific advantages over Allo transplantation yet it cannot be used, at present, in view of several socio-legal obstacles.

Need Statement

Gap between the number of organs donated and the number of end stage organ failure patients waiting for transplant is huge. As a matter of fact, transplants, as a treatment option, have successful outcomes, and the number of people needing a transplant is continuing to rise steeply due to an increasing life span and an increase in organ failure patients deserving to live, and with a good quality of life. Organathon Foundation (OF) has been created with the aim to promote organ & tissue transplantation, by reducing the demand - supply gap between the organs available for donation and the end stage organ failure patients waiting for transplantation. This would save a large number of patients who would have died otherwise.

The main limitation in organ transplantation is the availability of a compatible organ / tissue. In view of this, still hundreds & thousands of patients die waiting for the appropriate organ / tissue. The other limitation is the cost of the transplant surgery and the subsequent medications. This, however, is reasonably manageable and the costs are coming down with more & more centers developing the infrastructure and the expertise.

The main social ill associated with it is the commercialization and the exploitation of the poor, luring them to donate their organ. This ‘trading’ in human organs necessitated stringent laws and strict execution of these laws & rules. The demand – supply gap therefore widened further. Cadaver transplantation, in which the organs are harvested from a brain dead individual, has provided answers to several such limitations. However, there are several myths, fears & apprehensions associated with voluntary pledging of organs for donation. A concerted effort from the Governments, NGOs and the healthcare providers needs to be done to remove these myths, fears & apprehensions so that some of the organs of a dying person can be used to give life to several other human beings.

OF will methodically and in a structured manner, work in this field in an attempt to eliminate the statistical gap between waiting recipients and the available organs & tissues for donation. OF will work in tune with the NOTTO and focus initially on abdominal organs like kidney, liver, heart & cornea and subsequently enlarge it to intestines, pancreas, uterus etc.

Cadaver Organ Donations in India

In India, a large number of people die due to road traffic accidents. Global Status report on Road safety 2015, WHO (2015 ed) estimates road traffic fatalities of 130.1 per 100,000 motor vehicles or one fatality every 20 seconds. Delhi being ranked a city with the highest number of Road Traffic Accidents (National Crime Record Bureau, Ministry of road Transport & Highways, Law Commission of India, Global Status Report 2013), it can be a huge resource for cadaver organ transplantation. These patients are mostly young and otherwise healthy. However, only a small number of people that die due to these circumstances are able to donate their organs, for want of awareness among the public or inadequate sensitization of the doctors dealing with brain dead patients. There lies the importance of a systematic & dedicated effort to bridge this gap. North India particularly lacks such a systematic & dedicated effort and Organathon Foundation proposes to do exactly that.

Almost 1.5 lakh people in India need a kidney, but only 3000 of them receive it. Only 1 out of 30 people who need a kidney receive one. Almost 90% of people in the waiting list die without getting an organ. India’s annual liver transplant requirement is 25,000, but we manage only about 800. Almost 70% liver transplants are taken care of by a live donor, but 30% are dependent on cadaver donations. This figure is relevant for South India. In North India, however, less than 5 % organ transplantation is done from cadavers. This is because there is no organized dedicated organization, working for this cause.

As organs need to be transplanted as soon as possible following the donor’s death, they can only be donated by someone who has died in the hospital and only if the public & the care givers are adequately sensitized for it. Usually, organs come from people who are certified as brain dead while on a ventilator in a hospital intensive care unit. This may primarily be as a result of a hemorrhage, traffic accident or stroke.

In India, especially in North India, there is a major lack of awareness about organ donation in general and cadaver organ donation in particular. People have wrong notions, misconceptions, religious taboos and in many cases they have never given a thought to this or nobody raised the issue of organ donation before them, at the appropriate time. A major reason for poor cadaver organ donations is that many people have not recorded their wish or pledge about organ donation, or even discussed it within their families, in advance. We therefore need a proper central registry of potential donors, waiting recipients and authorized hospitals for organ / tissue transplantation. National Organ & Tissue Transplant Organization (NOTTO) is a good step in that direction. Besides such a central registry, there is a need for a dedicated organizations to dynamically & proactively coordinate between the potential donor families and the hospitals authorized to perform transplantations. The organs so donated are delivered to the hospitals based on compatibility, location, medical urgency, waiting period and so on.

Organ Donation after Brain Death (Protocol)

FFor organ recipients, a transplant often means a second chance at life. Vital organs such as the heart, pancreas, liver, kidneys and lungs can be transplanted to those whose organs are failing. It allows many recipients to return to a normal lifestyle. For others, a cornea or tissue transplant means the ability to see again or the recovery of mobility and freedom from pain. There is lot of progress in uterine transplant which could enable unfortunate women without a uterus to conceive & bear children. Either in the case of brain death, or when an individual suffers a cardiac arrest, individuals may ‘live beyond their death’ by sharing the ‘gift of life’ with others through solid organ and tissue donations. Solid organ donation (heart, lungs, liver, pancreas, kidneys, uterus) requires blood circulation to be maintained in these organs until retrieval. This is possible only in brain death where the functioning of these organs can be supported for some time.

The decision to use organs is based on various medical criteria, not age alone. It may be that a few organs are suitable for donation, while others are not. The doctors will decide at the time of death whether a person’s organs and tissues are suitable for transplantation.

A few guidelines with regard to optimum age limits and organ donation are:

Protocol for Cadaver Organ Donation

In every patient who is admitted for trauma or disease, all efforts are made to stabilize and treat him / her. If those efforts fail, the patient may be pronounced brain-dead, but only after the doctor’s evaluation, testing and documentation. This means that the heart is still functioning and the circulation & breathing is maintained artificially, even though his brain is dead. The brain dead status is pronounced only after following the standard protocol, accepted legally.

Consent from the family is obtained to proceed with the donation, and the organ procurement protocol is explained to them. This is a very sensitive interaction and is preferably done by specially trained grief counselors & transplant coordinators. This is done even when the brain dead patient is known to have pledged his organs and may even be carrying the ‘Donor card’. Organ transplant committee examines the process & certifies fitness for organ harvesting, after independently discussing with the family members of the donor. Here comes the role of the Organathon Foundation and its coordinators. These coordinators are specially trained for the purpose and with all empathy & sympathy, they counsel the family members of the brain dead patient. Such a coordinator, being an independent counselor (without any vested interests, unlike the care givers of the patient or the transplant team), is in a better position to counsel the family to donate the organs of their patient who is brain dead. This is indeed an opportunity for such a family to continue to ‘feel’ their deceased patient through so many lives saved by his ‘gift of life’ to the needy and suffering patients.

In the mean time, the organ donor is maintained on ventilator, and stabilized with fluids and medications. He/she also undergoes several laboratory tests.

Recipients are also identified, through the central registry network, for placement of organs. A surgical team is mobilized and coordinated to arrive at the hospital for removal of organs and tissues.

The donor is brought to the operating room. Multiple organ harvesting is performed, with organs being preserved through special solutions and cold packing. The ventilator support is then discontinued. The donor’s body is surgically closed and released.

The harvested organs are promptly & properly transported and transferred, as per strict protocol, to the recipient hospital, where the team is ready to proceed with transplantation, as soon as the organs arrive. Time is of great essence. Transportation is done by air or by road through green corridor, with the cooperation of the local traffic police.

Cadaver organ donation in India (Statistics)

Spain has the highest number of organ donation rate from brain dead patients in the world at 33 per million population.

In India our current organ donation rate is 0.05 per million (about 50 Cadaver donors per year). However if we can improve it even to 1 per million donation - we could take care of some of the organ shortages in India and this is how the calculations might work:

• At 1 per million donation rate we would have 1100 organ donors which would take care of almost all current demands for organs in India.
• At 2 per million donation rate there would be 2200 organ donors and there would be no necessity to undertake living kidney donations.
• If we reach 3 per million, we could take care of demand for organs for all SAARC countries.
• At 5 per million we would have 10,000 kidneys, 5000 hearts and 5000 livers and we could start looking at the problem of organ shortage in rest of Asia and other parts of the world.

Donor Card

Many people have a desire to donate their organs after their death but just stop short of expressing it. It is either some apprehension or some fear or just inability to muster enough guts to say so. Organizations like Organathon Foundation can enable & empower them to take this vital step towards ‘gift of life’ to several needy human beings.

Signing a donor card is the first step in making your wishes about donation known. A donor card is not a legal document but an important expression of one’s willingness to donate. While signing a donor card reflects one’s desire to donate organs after death, letting this known to the family members & friends is equally important. Organathon Foundation plans to issue smart cards so that it can be kept in one’s wallet along with other cards. When the time comes, it is the family members who will be available to give consent for donation. The brain dead patient’s family members are asked for the consent and if given, they have the option of donating organs like heart, liver, lungs, kidneys, pancreas and intestines and tissues such as cornea, heart valves, skin, bones, ligaments, tendons, veins etc.

About Us

The idea of Organathon Foundation was generated in the mind of Dr Ajay K Sachdev, who is a highly qualified (MS; PhD) Senior Surgical Gastroenterologist of repute. Though his main area of interest is Liver and Pancreas, he is concerned about the problems related to organ transplantation in general. During his vast clinical experience, he came across so many situations where one cadaver donation could have saved several lives, in one go. But there is lack of drive & commitment, among the healthcare workers & hospital Managements and a lack of awareness among the general public, about this issue.

Dr Ajay K. Sachdev then thought of doing something concrete in this direction. He then shared his thoughts with his colleagues, another Senior General Surgeon with a conscience.

Besides this, there is a large team of persons including Board of trustees, advisors, technical experts, coordinators, funding partners and support staff, working for the success of the dream project of Dr Ajay K. Sachdev.

Board of Trustees

Dr Ajay K Sachdev : A founder member of the Super-speciality department of Surgical Gastroenterology in the reputed G.B. Pant Hospital ND, was also instrumental in starting M.Ch course in 1992. He was examiner / teacher & guide for the same for more than a decade. In private corporate Hospital too he maintained his professional altruism & worked as CEO, Head of Department, Chairman, Director at different times and committed to provide exceptional leadership in the area of Gastro-sciences / G.I. Surgery / G.I. Oncology, in leading multi super-speciality Hospitals / Medical Institutions. His main area of interest is in HPB Surgery.

Dr. MohsinWali : A senior reputed Physician, recognized for his outstanding contributions in the field of Medicine, Academics, Administration, Medical research & Innovations, has worked as Physician to the President of India (three times), Physician to the Prime Minister of India, Hony. consultant to the Armed Forces of India and decorated with several awards including Padam Shree.

Dr T. D. Dogra : A senior & reputed expert in Forensic Medicine & Toxicology, with International standing, retired as Professor & Head Department of Forensic Medicine & Toxicology, AIIMS, Delhi, presently working as Pro Vice Chancellor, SGT University at Gurgaon and Member Medical Council of India.

Mr Venkat Ramani : A senior advocate of Supreme Court and Member Law Commission of India, associated as a resource person to the National Judicial Academy, Bhopal and several Law Schools. He has significantly contributed in several National & International engagements in legal issues of importance.

Dr Prakash Khanduri : A renowned & highly experienced surgeon with exceptional skills, credited with performing the first successful liver transplant surgery in India in 1999. He has been an examiner for DNB, MS, M.Ch & PhD GI surgery and M.Ch Surgical Oncology courses. Presently working as Emeritus Professor of Surgery & Head Division of Hepato-biliary Transplant surgery at St. Stephen’s Hospital, Delhi.

Board of Advisor

Prof Jagdish Mukhi (Chief Advisor) : A senior & reputed political activist and a professional Finance expert with PhD in Finance. A senior member of the BJP, he has served as Finance & Higher Education Minister of Delhi and is associated with several charitable projects.

Mr Siddharth Chadha (Chief Technical Advisor) : Bachelor of Technology (Pune).

HNV & Associates (Chartered Accountants) : to serve as (Advisor Finance, Accounts & Taxation) a group of committed & dedicated chartered accountants with long experience in the field.

Mr Gulshan Virmani (Advisor Social) : A committed social worker and connected with public service.

Sh Rajinder Kumar Yadav (Advisor Social) : A well known and popular political & social activist of Gurgaon, presently serving as Councilor, Municipal Corporation, Gurgaon

OUR MISSION

The mission of Organathon Foundation is to ensure enrolment of all eligible persons to pledge their organs and to issue a ‘Donor Card’ to them. This is to be done through innovative & effective public education campaigns, in different districts. The organization will also sensitize the care givers of hospitals which encounter ‘brain dead’ patients, so that they explore the possibility of organ donation, in relevant cases. We will remove their apprehensions, fears & myths about organ donation prevailing in some peoples’ minds. The organization also strives to put in place a central registry (to be linked with NOTTO) of organ donors and waiting recipients and to promote cadaver organ donation program, to reduce the demand supply gap in saving lives of end stage organ failure patients.

We wish that no patient of end stage organ failure should die for want of an organ.

OUR VISION

No end stage organ failure patient should die for want of an organ for transplant. Through a systematic & dedicated networking, registry, training and counselling, donor card becomes a ‘gift of life’ pledge, with all eligible persons. Our endeavor will be to do mass campaigns for making the general public aware of the transplantation programs, need for cadaver organ harvesting, satisfaction with giving a ‘gift of life’ without any harm to the brain dead patient. Periodic sessions will be held in schools, colleges, Institutions, Corporate houses etc, following a due process. There is a huge vacuum in North India about cadaver related organ transplantation. In the first year, we wish to enroll 1 % of youth in North India, to have donor smart card in their pockets. Focus to be in North India initially, then across the country and finally at a global level.

Our Logo

This logo represents two human beings, happily & heartily ‘transferring’ the organs from one to the other. The Tag line “Be a doer … be a donor”, inspires the youth to do something constructive to live beyond their death. An organ donor lives after his death through the lives he had saved by donating his organs.

Objectives of Organathon Foundation

This organization has been set up to revolutionize cadaver organ donation in India, by educating the public, through various means and issuing the ‘organ donation card’ to all persons willing to pledge their organs. A vibrant & active registry of such donors along with a proactive networking with the hospitals with appropriate recipients will ensure timely reach out of the organs to the maximum number of needy patients. This organization will also have a trained force of coordinators & counselors who will keep track of potential donors among the brain dead patients in the hospitals, through the central registry. A sensitization of the doctors, paramedical staff and the hospital management will also be done to ensure a smooth compliance with the standard protocols. This start up project will also provide employment to a large number of coordinators and other support staff. As per need, sub centers of Organathon Foundation will be started in different regions for better coordination.s

The broad objectives are :

This being a pro bono publico initiative and will be executed through Education, Health and Social work & Transplant related and other activities in the holistic way. Some of these activities planned are as under :

Education :

• Education & counseling of the general public through various innovative awareness programs / events to motivate them to pledge their organs
• Issue organ donor cards to those who pledge their organs so that they not only act as brand ambassadors for organ donation but also facilitate their family members to give consent for organ donation if & when they are in brain dead state
• Suggesting to the Governments at the Center & the States to incorporate a chapter on Organ Transplantation and Organ Donation in the text books at different levels, to inculcate the good thoughts at impressionable stage itself

Health :

• Different programs for preventive & promotive health of the public to prevent end stage organ failure
• Facilitate the processes of organ harvesting, organ transportation and organ transplantation, through communication & logistic support and financial support wherever required.
• Sensitization of the Doctors, Nurses & other care givers towards brain death protocols & other matters related to organ transplantation
• Training of grief counselors & transplant coordinators

Social work :

• Helping the persons to ‘live beyond their death’ by way of deceased organ donation
• Facilitating the process of pledging of organs, grief counseling & coordinating with the families of brain dead patients for organ donation and facilitating organ harvesting, transportation and transplantation in appropriate end stage organ failure patients.
• Financial & social help to poor & indigent organ donors / recipients, if & when required

Note: - Indian Scenario - Needs pan holistic approach to meet Western & Europian figure in respect to Organ Pledging. International Agencies have already declared Obesity as a Tsunami and this needs to be tackled at various level involving Governmental & Non-Govenrnmental agencies. Please see Knowledge Center for details.

Operational wings of Organathon Foundation

The OF plans to achieve its mission through its following wings :

Public Education (PE) wing. Donor Cards in different languages and organ donation awareness campaigns are the focus of the public education wing of OF. The Donor card registration will be encouraged online. However, if during the on-site campaigns, persons wish to be enrolled or if the person is not able to or not willing to make it online, onsite donor card will be issued to those who are willing to pledge their organs. In all cases, a smart card with necessary details will also be delivered at the residential address of the registered donor. Along with the Donor Smart Card, a ‘Thank-You Brochure’ titled “Be a Doer … Be a Donor” will also be sent. This will contain the basic information about the concept of Organ Donation and the FAQs related to this. This will also contain a request to motivate other friends & relatives to pledge their organs and obtain the donor card.

Organathon Express(OE) This Newsletter will be published on a quarterly basis by the ‘OE wing’. It will carry national and international transplant news and keep track of the Indian cadaver transplant programs. The online format will be mailed to the data base related to Donors, Donor Card holders, Waiting recipients, Coordinators, Doctors and care providers, through central registry maintained by the OF. A substantial number of hard copies will find a place in the waiting halls of public places like hospitals, diagnostic labs, physiotherapy centers, chemists, and public places and libraries as well as projected in the print & electronic media including the social media.

Patient Support (PS) wing. This wing will provide support to the organ failure patients and their families and to give them a platform to discuss their problems with each other. It will also interact with a panel of experts of OF along with doctors, dietitians, psychologists and counselors associated with this organization. Subsidized transplant related medicines will also be supplied to the poor & indigent patients.

Organathon network for Organ Sharing (ONOS). Networking is the hallmark of such a venture. This wing of the organization will ensure a dynamic & effective networking with the Donor population, waiting recipient population as well as centres which perform transplant operations and those which deal with critically ill patients. It will be linked to the NOTTO, either directly or through ROTTO & SOTTO. The overall goal is to help the thousands of patients waiting for an organ or tissue transplant. The networking will also require tie ups with Road & Air ambulances as well as the local administration (including the traffic police) for green corridors during transportation of the organ to the transplantation center.

Training & Counseling (TC) wing. This wing will focus on public education, patient counseling and training of coordinators. It will periodically hold sessions for doctors, healthcare workers and hospital administrators to sensitize them, as they hold an important place especially in cadaver organ transplantation programs. Training & counseling of teams approaching schools, colleges, Institutions, Corporates & other public groups will be complemented by training & counseling of the coordinators interacting with the family members of the brain dead patients for convincing them for the ‘gift of life’ from their deceased loved one.

Central Registry (CR) wing. This wing will be fully responsible for maintaining, monitoring and analyzing the data in this registry. This data base will include the Donor Card holders, waiting recipients of end stage organ failure and the hospitals authorized and registered for organ transplantation. Proper profiles, categorization and SOPs will be prepared for facilitating objective analysis. It will be linked to the NOTTO, either directly or through ROTTO & SOTTO.

Scope & Limitations of the OF Central Registry

Indian Society of Organ Transplantation (ISOT) and an Indian Transplant Registry endeavor are centralized repository of information of all transplants in India (www.transplantindia.com). The proposed three phases of this endeavor are :

• First Phase :‘Fast track’ retrospective data in terms of number of transplants (all inclusive), sex, types, immune-suppressants used by the Transplant Hospital(s) etc are beyond the scope of the Organathon Foundation.
• Second Phase : To ensure that all enrolled organizations / member institutions would be encouraged to enter data prospectively. The OF would start its activity from the Second Phase. The zone wise plan is to cover North Zone followed by Central Zone, followed by other zones across the country. Lack of scientific transplant related data like immune-suppressants used, outcome etc and the miniscule practice of cadaveric transplants in North India has prompted OF to start this endeavor, with clear aims & objectives with special efforts to avoid conflict of interest, if any. It will be done in coordination with the NOTTO, either directly or through ROTTO & SOTTO.
• Third Phase : To derive data, audit it and use it for research & publications etc and beyond.

Objectives of Transplant Registry

Since kidney transplant was initiated much earlier than transplantation of other solid organs, the eleven objectives mentioned in the Indian J Urol. 2007, 23(3):272-277, provide scientific guidelines for the other solid organ transplants too.

The data collected by the OF will be confidential and stored in secure dedicated server, will be allowed access only by the registered full members of the OF. Further, access will be by the specific password of the Institution concerned and only the registered member would have the facility to edit, update and upload the data, as per pre-defined process. No member Institution will have access to the data of other member Institutions, though they will be able to view only the National / Regional data. The desktop data will be synchronized with the remote server, whenever the computer logs onto the web. Organathon Foundation will of course follow the guidelines / norms formulated by the NOTTO or other regulatory authorities for the purpose.

Design of the Registry

• Domain name registration
• Security issues :The data base will be co-hosted on the dedicated server of the OF. For security reasons, time out option will be put in place. In this the idle screen logs out after a certain, pre-defined period of time. Similarly, if wrong login id or password is keyed more than 3 times, the system locks and does not allow the user to proceed without contacting the OF helpline & following the security process.
• Registration process : Hospitals / Institutions actively doing transplantations will be allowed through their authorized official, to register on the OF website with their essential information and the request for login id & password. An email will then be sent within 24 hrs issuing the password, with facility to change the password as & when required.
• Navigation through pages : In order to make the registry user friendly, the algorithm for navigation will be kept very simple – different for different organs.
• Access to data : The Institution will be allowed only through its authorized official (via OTP), to access and update their own data. The Institution authority will be able to view the collated data but will not have access to data from another Institution.
• Data Collection : The OF has decided to start with the prospective data format. In case the need arises, later on, Fast track retrospective data will also be formatted, depending upon the feasibility & requirement for scientific / education purposes.
• Flexibility of the registry : The module of the prospective registry will be created using subsets of the data base. This will enable more fields to be added in the future to upscale it, if required.
• Audit : The collated data, using in-built programming commands, will help rigorous scientific analysis. This can be accessed by the Institution for education, training and research.
  The Transplantation of Human Organs Act 1994 (THOA) has made commercial dealings in organ donation illegal. This law was enacted, based on the resolution of the 44th World Health Assembly to provide for legitimate transfer of organs by voluntary donors and also for defining ‘Brain stem death’ (Guiding Principles on Human Organ Transplantation, WHO Resolution, WHA 4425 (13 May 1991).
  After Kidney transplantation, Liver Transplantation is now well established in India. Heart transplant is also going on for some years. Next endeavor is to promote small bowel & pancreas transplantation. OF will keep track of all the developments in the field.

Our Differentiators

• Promoted by reputed Surgeons
• Systematic, focused & dedicated approach
• Reputed stalwarts as Board of Trustees and Advisors
• High potential & vacuum of cadaver organ transplantation in North Zone of the country

Road map

Organathon Foundation is a charitable public trust and has been created by due process with its Registered office & Corporate office at 8/6, T/F, WEST PATEL NAGAR, NEW DELHI-110008 and 151; Vipul Trade Center, Sohna Road, Sector 48; Gurgaon respectively. This venture has no commercial intent and will serve exclusively in education, health and social welfare fields of Organ Donation and organ transplantation. No charges will be taken from those who pledge their organs. They will be issued ‘Donor Cards’ free of charge. No charges will be taken from the recipients, irrespective of which organ and which surgical center they are operated in. As a matter of fact, the organization will facilitate the process and even provide support (financial & otherwise) to the needy patients. This project will not only benefit the society by encouraging cadaver organ donations, but will also provide employment to a large number of youth. With the opening up of sub centers in different regions, the employment opportunities for the youth are likely to grow many folds. The OF will also launch certificate and diploma courses to educate & train un-employed youth to make them employable. After the basic project has stabilized, the OF will also venture into Organ transplant Research, from Stem Cells to Organ Factory to Xeno-transplantation.

A registry is an essential part of the project. It will mention as to who and where potential donors are. A registry gives to the planners enough information to devise strategies to get more public cooperation and commitment towards organ donation. Having a registry in place allows doctors and transplant coordinators to check if a brain dead person had pledged to donate his organs and his basic profile details. With this information, it becomes easier for the coordinators to approach the family for consent. It helps in saving crucial time in the process of organ donation. The registry will be available Name wise, City wise, State wise and per date of registration.

Financial Aspects

Need for Funds

The initial Capital has been formed as a corpus through personal loans taken by the founder trustees. Funds will be sought from the Government as well as from Institutions & Philanthropists to run the organization, conduct the campaigns & events as well as to return the loan. Organathon Foundation, will require lot of funds for

• projects related to the objectives of the organization
• projects / events / campaigns for mobilizing & motivating the public for pledging their organs
• events for training the coordinators & other support groups working towards the objectives
• Projects like central registry, newsletter, journal, promotional activities
• Infrastructure and overhead costs
• Salaries of employees, and remunerations of part time workers & volunteers etc.
• Operational costs

Sources of Funds (in cash or in kind) include :

• Voluntary contributions from Trustees
• Grants from the District Administration as well as the State & National Government and its agencies. When the objectives of the OF are pro bono and completely apolitical, Government funding can be expected more comfortably
• Private sector ‘for-profit’ companies
• Philanthropic individuals, companies & organizations
• Donations from individuals
• Support from other NGOs
• International agencies

Proposed Activities

The first year (2016-17) activities :

• Inauguration of the OF corporate office. Launching of the OF website
• Launching of the OF by way of a conference on “Organ Transplantation – past, present & future”. It will be open to all care givers related to organ transplantation, accross the country. Faculty will be stalwarts in the field from India & abroad. Guests will include high end dignitaries of the country / NCR. The venue will be decided between Vigyan Bhawan, Habitat Center / Taj Palace. It will be held in the first week of May 2016.
• Launching of Mobile App of OF
• There will 3 more conferences for doctors & other care givers during this year (Q - 2, 3 & 4). Atleast one of them in a year to be of International level
• One campaign every month for spreading awareness about organ donation and motivating them to pledge their organs. The target areas will include senior school students, college students, students of professional Institutions, teachers & staff of these areas of learning, RWAs, Corporates, Trade unions, Social clubs (eg. Rotary club, Lions club etc), Professional associations.
• Spreading the message digitally through Emails, social media platforms and Google
• Spreading the message through FM radio
• Spreading the message through Brochures and Advertisements in Newspapers & Magazines
• Training programs for Transplant Coordinators – atleast once every quarter
• Starting a Newsletter for the general public, to be published once every quarter
• Half Marathon once every 6 months, to be inaugurated by a celebrity
• Organ Donation mela, atleast once a year
• Helping poor & needy patients of organ failure, financially & otherwise, by process approved by the Board
• Constitution of the Central Registry
• OF meetings :
  • Executive committee meetings once every month
  • Board of Trustees meeting once every quarter
  • Advisory Board meetings to be prior to each Board of Trustees meetings (same day or 1-2 days earlier)
  • Annual General Body Meeting of the Trustees

The second year (2017-18)activities :

Besides all the activities of the first year,

• Promotion of all activities beyond the Delhi NCR, with induction of more coordinators & more operational offices in different areas
• Certificate courses in Transplant coordinators
• A Quarterly Journal of Organ Transplant Science
• Excellence Awards function for Organ Transplant Science

The third year (2018-19)activities :

Besides all activities of the second year,

• Promotion of all activities throughout the North Zone
• Diploma courses in Transplant Coordinators
• Expansion of the Corporate office, area wise & staff wise

Anticipated Expenditures

• Expenses related to the activities, as listed above
• Salaries of employees (full time & part time employees)

Year 1 :

• CEO
• Finance administrator
• IT Manager
• Project officers x 2
• HR Manager
• Receptionist
• GDA x 2
• Coordinators x 4 (part time, performance based)
• Trainer of coordinators (part time)

Year 2 :

• Staff of last year
• Project officers, Coordinators & Trainer strength doubled

Year 3 :

• Staff of last year
• Additional coordinators, Project officers & Trainers depending upon the other operational offices started
• Compensation to Volunteers
• Compensation to consultants
• Office space security deposit, monthly rental, overhead expenses
• Gadjets for the office eg. Water dispenser, Vending machine, Printers, Telephone connection and other miscellaneous accessories like dustbins, footmats, cleaning material, table stationary etc
• Travel expenses
• F & B expenses
• Printing & Stationary
• Postage

Policy to engage with other NGOs

• Locate other NGOs working in our territory or working in projects which might be complementary to our NGO
• Meet relevant NGOs, give a presentation of our concept and propose ideas for our projects
• Ask for advice & help in developing strategies
• Other NGOs are our partners & not competitors
• Get ideas for writing project proposal and for budget requirements
• Make your presence in the community meetings & public discussions to introduce our NGO & our objectives
• Offer help to them wherever feasible
• Make your presence felt in social media
• Maintain a data base of relevant individuals / NGOs who might be of help. Research their background & their current activities
• Explore possibilities of partnering with them proactively, where there is convergence of activities
• Make the individuals members of your organization, as many as possible.
• Interact with international NGOs to explore possibilities of help & support After establishing the culture of organ donation in the society, structured courses (Certificate courses and Diploma courses) will be started so that the movement is taken to a higher level through those taught & trained by this organization.

Suggestions for the Government, that we would pursue

• Develop a culture of Pledging Organs for donations
• Structured education of school & college students about organ transplantation and pledging of organs. A chapter on organ transplantation be included in the text books at different levels
• Non Organ Transplant Retrieval Centers (NOTRC) :any hospital with > 25 beds and a working OT & an ICU should be declared NOTRC.
• Brain death declaration to be done as per protocol. Retrieval of organs may be done by the local team or by the team from the transplant hospital. Transplant coordinators and grief counselors should professionally handle the situation
• In MLC cases, the police needs to be sensitized to speed up the inquest proceedings, once the family has agreed for organ donation. Police should also facilitate the post mortem (may be performed in the same hospital where death has occurred) & handover of the body respectfully
• While transferring a body from one State to another for the performance of last rites, NOC is required from the hospital & the police. This may be issued promptly.
• Public salutations & ethical awards to the deceased persons who donated their organs (posthumously)
• Presumption of consent (opt out system)
• Development of SOTTO / HOTTO for Haryana,
• We should undertake measures to reduce the incidence of organ failures. At the same time ensure that no such patient dies for want of an organ
• Family of Organ Donor be given priority in the waiting list, should they ever need organ transplantation in the future
• We can have dedicated teams of air / surface ambulances (specially designed) for moving to a centre for organ harvesting and then for taking the organs to the destination hospitals via the green corridor, for transplantation
• Which organ to go where is decided by the Central registry of the State / Region.

Note: Dr. Sachdev with the help of Prof. Jagdish Mukhi are actively persuing the two following issues with the various Govt. & Autonomous agencies:-

1. HRD Ministery, CBSE, NCERT - To include a chapter on ORGAN TRANSPLANT in the textbook from sixth class onward with increasing scientific contents and also to include a chapter on CHILDHOOD OBESITY - A menace that has achieved a Tsunami in nature (New Studies Highlight Increasing Global Prevalence of NAFLD/NASH and Its Considerable Toll)
   http://www.news.com.au/world/tsunami-of-obesity-worldwide-study/news-story/18473238e19daedee94497e4c2f07495 - Health & Education part of the foundation
2. Hon'ble Minister Nitish Gadkari has been apprised of to include an "OPT-OUT" Option regarding organ pledging in the driving licence. (Routine policy in most of the Europian & Western Countries) OSD to the Hon'ble Minister agreed to include this option in the new Motor Vechile Act.

Evaluation of the OF

The progress & growth of the Organathon Foundation will be determined by the extent to which the public has been reached out, number of donor cards issued and the number of brain dead patients’ families convinced for organ donation as also the number of organs harvested and transplanted.

Conclusion

The Organathon Foundation has been promoted by senior qualified & experienced surgeons, with the aim of contributing significantly to the society by way of motivating the eligible persons to pledge their organs so as to eliminate the demand – supply gap between the organ failure patients waiting for organs and the available organs for the transplantation. Their dedicated and systematic approach and the patronage by stalwarts from different walks of life ensures successful achieving of its mission.