Access, Justice & Autonomy in Transplantation in India;
Voices from the Ground – A DICG-NATCO Roundtable

February 09, 2025, 2.00-6.00 PM, New Delhi

Organized by:

Background

Organ transplantation is a remarkable advance of modern science with high success rates. It now has a central role in saving & improving the quality of life of those with end stage organ failure. It is also being performed in increasing numbers in South Asia and India. Globally, India ranks very high in total number of transplants, though the number per million population is low which means access is a big challenge. With improved expertise and capacity there is now an opportunity for Indian citizens to benefit from this life saving treatment.

The regions huge population, the increasing incidence of organ failure and recognition of transplant as a viable option for many diseases has resulted in an increase in the demand supply gap. Like the rest of the globe, donation and transplantation in the region is impacted by socio-political and cultural factors and the health system structure. This reflects in many ways some of which are unique to the region.

With barriers to deceased donation, a large majority of transplants are performed with living donors. Given limited public sector capacity, transplants are largely performed (around 80 to 90%) in the private sector where costs are unaffordable for ordinary citizens and push many into financial catastrophe. Though the private sector has helped accelerate the growth of transplantation this is also leading to monetisation of the process. Unrelated paid donation continues to rear up its head serving as a grim reminder of the organ trade in response to which India’s Human Organs Transplant Act of 1994 (1) was promulgated. India has also become a major destination for foreigners seeking transplants and recent government data shows that ten percent of transplants are performed on foreigners one of the highest in the world (2). This includes both legal travel for transplant and commercial donation. Whilst this is seen as a part of the growth of medical tourism it has implications for public perception as well as access for locals

Besides, given strong social hierarchies living donors often hail from vulnerable groups and subtle coercion is not uncommon. In related transplantation family & social hierarchies operate and data consistently shows women especially wives donating to men. A free and fair consent is thus a challenge and donor autonomy and protection continues to be a key concern.

The Govt and NGOs are leading national campaigns to promote organ donation after death which is globally how a majority of transplants are performed. In some states citizens have responded with magnanimity with families agreeing to donate organs of a close relative. This has also enabled heart & lung transplants. However, given the high costs access to transplantation of deceased organs is still out of reach for ordinary citizens. We are thus faced with an incongruous situation where appeals are made to all citizens to donate organs in social solidarity, but a majority are unable to receive a transplant. Financial barriers are mainly due to an inbuilt structural bias as most donated organs end up in private hospitals which currently have the capacity to perform transplants.

Transplantation policies in India have attempted to address access, justice and donor autonomy through legal instruments and regulation. Recently national and state insurance and funding schemes are attempting support but are inadequate for most patients . The high costs and private sector profile of transplantation results in it being perceived as an elite activity and such public perception is likely affecting deceased donation rates. Transplantation in the region thus needs conscious reform for its benefits to reach all our citizens in a fair and justiciable manner.

One reason why reform maybe slow is because decision making is dominated by the healthcare industry and transplant clinicians. This leads to conflicts of interest. A recent study of six countries across the globe which included India & Pakistan the two largest countries of South Asia identified lack of representation of voices from the ground and regulatory domination of policy making as one of the barriers towards the implementation of ethics and equity principles (3). The inclusion of the voices of citizens, patients, health rights groups, non-governmental organisations, allied healthcare staff including nurses and transplant coordinators will bring in fresh and independent voices. Listening to those with lived experience of transplantation, individuals working at the frontiers as well as movements for health equity and patient’s rights is one pathway towards reform. This will also improve public perception & trust which is key to citizens participation and improving donation.

The Declaration of Istanbul Custodian Group (an initiative of the Transplantation Society & the International Society of Nephrology) is a global body which promotes the Declaration of Istanbul (4) which upholds and advocates for ethics, equity & justice in transplantation across globe. A recent meeting involving multiple global organisations including the WHO renewed the call for transparency & oversight in the conduct of global transplantation including in the emerging areas of cell & biologic therapies (5). This was followed by a new resolution which was passed by the 77th World Health assembly in June 2024 (6). The Resolution emphasises the need to expand transplantation, maximise donation from the deceased, guarantee protection of the living donor, combat organ trafficking and address innovation.

Jointly organised with the ISN & NATCO, this round table meeting and focussing on issues of access and autonomy in India’s transplant ecosystem the meeting has the following broad aims:

To provide a platform to voices from the ground & foster dialogue
To learn from the experience of other campaigns in the health sector
To document and disseminate the proceedings for a wider audience & advocacy
To create the nidus for a long-term alliance for inclusive and justiciable transplantation in India

References

Transplantation of Human Organs Act, India, 1994 (www.notto.mohfw.gov.in/WriteReadData/Portal/images/THOA-ACT-1994.pdf)
National Organ and Tissue Transplant Organisation, Annual Report, 2023-24 (www.notto.mohfw.gov.in/WriteReadData/Portal/News/858_1_Updated_NOTTO_A NNUAL_REPORT08-05-24_.pdf)
Barriers and facilitators to Implementation of the Declaration of Istanbul (DOI)’s recommendations in transplantation policies in developing countries; a qualitative study of 6 countries; DICG & George Institute (https://cdn.georgeinstitute.org/sites/default/files/documents/implementation- declaration-istanbul-executive-summary.pdf)
The Declaration of Istanbul; 2008 (modified in 2018) (declarationofistanbul.org/the-declaration)
Domínguez-Gil B, López-Fraga M, Muller E, Potena L, Martin DE, Pérez Blanco A, Van Assche K, Oniscu GC, Chatzixiros E, Jha V, Miñambres E, Cuende N, Forsythe JLR, Gardiner D, Nagral S, Tullius SG, Cooper M, Delmonico FL. Santander Global Summit in Transplantation: Supporting Global Convergence in the Shared Goals of Sufficiency, Transparency, and Oversight. Transplantation. 2025 Jan 1;109(1):2-6. (https://pubmed.ncbi.nlm.nih.gov/39437365/)
Increasing availability, ethical access and oversight of transplantation of human cells, tissues and organs; World Health Assembly Resolution; WHO, 2024 (https://apps.who.int/gb/ebwha/pdf_files/EB154/B154(7)-en.pdf)

Invited Participants (Representatives)

Organ donors and recipients
Global & national professional organisations
National Organ and Tissue Transplant Organisation (NOTTO), State Organ& Tissue Transplant Organisations (SOTTO)
NGOs in donation & transplantation Patient support groups Patient/Health rights groups
Legal groups / lawyers Media