Organ / Tissue  and Bone Marrow Donation in India
Vishwa Mohan Katoch,MD,FNASc,FNAMS,FASc,FNA
Secretary,Department of Health Research, Ministry of Health & Family Welfare, Govt. of India

India with its billion plus population has great potential for organ donation, however the motivation levels for the same are much below the expectations due to a generalized lack of education and information to the public at large. While the regulatory framework put in place by legislature has tremendously improved the outlook especially following recent amendments in Transplantation of Humans Organs Act (Transplantation of Humans Organs and Tissues Rules, 2014), perception and participation among the population has remained the same. Hence there is an urgent need to spread the awareness about organ donation as a movement to address the problem of acute shortage of organs in India and save many lives.

National Organ and Tissue Transplantation Organization (NOTTO) has been set up under the Directorate General of Health Services, Ministry of Health & Family Welfare, Govt. of India and its headquarter is located at the National Institute of Pathology (ICMR) Building, Safdarjung Hospital, New Delhi.  This organization has two Divisions – 1) National Human Organ and Tissue Removal and Storage Network and 2) National Bio-Material Centre.          

National Network Division of NOTTO - The National Network Division of NOTO has already started functioning initially for Delhi but will gradually expand to include other states and regions of the country.  This will work as the Nodal Network Agency for procurement, allocation and distribution of Organs and Tissues throughout the country. At the national level, NOTTO will lay down policy guidelines and protocols and also create a databank by networking with similar regional and state level organizations.  It will function to create awareness and promote organ donation for transplant purposes, facilitate coordination of organ sharing, assist in data management of all related activities, provide consultancy support on legal/non-legal aspects of organ donation and transplantation and organize training activities for various groups involved in transplant activities. For the purpose, NOTTO will maintain the waiting list of patients registered for organ transplantation and assist centers in associated activities.

National Bio-Material Centre (Tissue Bank) - As a part of the Transplantation of Humans Organs and Tissues Rules, 2014, National Bio-Material Centre (Tissue Bank) is also being established to fulfill the demands of Tissue Transplantation including activities for procurement, storage and distribution of Bio-materials and will also fulfill the quality assurance. It will focus on tissue allograft and provide services for tissue procurement and distribution, storage, preservation, tissue tracking, quality assurance training and other need based requirements.

Programmes in Tertiary care/Specialized Institutions : Besides NOTTO and National Bio-Material Centre which are being led by the MoHFW, several other Institutions like the AIIMS, New Delhi; CMC Vellore; Narayan Hridulaya, Bangalore; Army Hospital R&R, New Delhi; Tata Memorial, Mumbai and others  have their own services and research centers for organizing tissue donation and transplantation.  AIIMS, New Delhi  has been a pioneer in this field with the first such Department of Transplantation Immunology and Immunogenetics established in the country way back in 1993. The Department serves as a national referral centre for Histocompatibility testing along with Pre and Post Transplant Immunological monitoring services in organ and bone marrow/Hematopoietic Stem Cell Transplantation.

Asian Indian Donor Marrow Registry (AIDMR) : In 1994, the AIIMS established the Asian Indian Donor Marrow Registry (AIDMR), the first such in India and which has been a part of the Bone Marrow Donors worldwide (BMDW). The main objective of the AIDMR has been to enroll volunteer healthy donors of Indian ethnic background and to serve as a nodal centre for helping patients who lack an HLA identical sibling donor in the family. The process of expanding this registry at the national level has been going on since then.  The needs and requirement of such a registry are relevant for saving lives of several patients.
Hematopoietic Stem Cell Transplantation (HSCT) is a recognized curative therapy for a variety of malignant and non-malignant diseases; however a major limitation in HSCT is the availability of a genetically matched donor particularly with respect to the immune response genes of the HLA system. Practically, only about 30% of patients have a chance of finding an HLA identical sibling in the family, while the remaining depend on other sources of stem cells like the matched unrelated donors. It may be mentioned that the international unrelated donor pool is already over 22 million and more than 50 % stem cell transplants done overseas use matched unrelated donors (MUD) from these registries. However, representation of donors of Indian ethnicity is very dismal making it very difficult to find a suitable matched donor for an Indian patient. Moreover, studies on genetic diversity of the Indian population indicate the presence of several ‘novel alleles’ and ‘unique HLA haplotypes’. Therefore an Indian patient carrying such HLA allele/phenotypes has very little chance to find a matched unrelated donor from the existing 22 million databank. To that extent, the AIDMR aims at enrolling a large donor pool comprising of individuals with several ethnicities and from various geographic regions of India.
In a recent public launch initiative, a donor drive was conducted with active support and involvement of Dadhichi Deh Dan Samiti, led by Mr Alok Kumar. In this drive, the Honorable Minister for Health and Family Welfare, Dr Harsh Vardhan enrolled himself as the first volunteer donor. Expansion of AIDMR will promote the MUD transplant activity in India to a great extent and save hundreds of precious lives for the lack of optimal availability of family donors. 

Public Launch of the Asian Indian Donor Marrow Registry by the Honorable Minister for Health and Family Welfare, Dr Harsh Vardhan.
Honorable Minister for Health and Family Welfare, Dr Harsh Vardhan and Mr Alok Kumar, Director, Dadhichi Deh Dan Samiti giving their blood samples during public launch initiative of the Asian Indian Donor Marrow Registry held at AIIMS, New Delhi on Aug 6, 2014.

National Institute for Molecular & Transplant Immunology (NIMTI)  (Indian Council of Medical Research (ICMR) – Establishment of this Institute with five main functional components, each having structured areas of research and laboratory related activities is being proposed by ICMR. These components will deal with the tissue typing and histocompatibility, transplant immunobiology, clinical immunogenetics, stem cell research and establishment of unrelated donor marrow registries.  The Institute will also develop modules of teaching and training as an integral part of capacity building and world class high throughout laboratory services in relation to optimum donor selection and post transplant monitoring.  In the Phase I of development, the above components will be established by recruiting minimal scientific, administrative and technical staff in hired premises.  A physical facility with combined diagnostic and research laboratories will be established as a part of the Phase II of development.  The Institute proposed to be located at New Delhi, will have the following thrust areas.

  1. Basic and Cellular Immunology to conduct epitope mapping, vaccine design and development of a database into the genomic diversity of human MHC in diverse Indian populations.
  2. Molecular Immunology including high throughput tools for immunogenetics, polymorphic Ir genes, functional genomics, gene expression and proteomics as well as molecular therapeutics.
  3. Transplant Immunology in relation to organ and hematopoietic stem cell transplantation, development of immune mediated biomarkers of graft rejection, development of protocols to determine donor specific antibodies and their removal strategies
  4. Clinical immunogenetics with focus on understanding the biology of immune response (Ir) genes, identification of susceptibility for inflammatory, autoimmune and infectious diseases and development of MHC based vaccination approaches
  5. Stem cell research and creation of inducible pluripotent stem cell lines (iPS) from individuals screened for homozygous MHC haplotypes and establishment of a frozen cell bank of these lines and understanding their long term effects on engraftment
  6. Expansion of AIDMR for recruitment of unrelated voluntary donors towards augmentation of marrow unrelated donor transplants
  7. Technology development, bioinformatics and quality assurance
  8. Education and Training

Future thus holds a great opportunity for India to emerge as leader in this area both scientifically and also socially by meeting  a big  unmet need of Indian people. Certainly there are miles to go but we can reach our goal definitely.