Until a year ago, India was world’s sixth-largest economy by nominal GDP and the third-largest by purchasing power parity (PPP) and spends merely 0.9 - 1.2% of total GDP on public healthcare which amounts to Rs. 621 per capita. Struggling to provide the necessary healthcare facilities for its population, the majority of the population lives below the poverty line and has to pay out of pocket for the healthcare services.
Even though the organ donation awareness is increasing, unfortunately, due to lack of organs in banks and poor infrastructures almost 500.000 people die awaiting their turn for organ transplantation in countries like India. In 2017, 20.000 people died of liver disease, 50.000 died of heart disease, and 1.000.000 have corneal blindness. Almost 220.000 people were awaiting kidney transplants in India in November 2017, of which only 15.000 received a kidney.
With the increase of Chronic Kidney Diseases and corneal blindness in the Indian population, it has become of primary importance to work on the organ donation structure of Indian healthcare. India has set a new Guinness World record by online pledging by 24.000 individuals for organ donation on 9th August 2017, but are these organs transplanted when the need arises?
There are many affecting factors for this namely: Family consent rates, governing policies and acts, religious bias, and myths. In this article let's discuss the governing policies and acts in Indian Legislation.
In India, respective state governments govern all the health-related policies. THOA (Transplantation of Human Organ Act) 1994 was initiated on a request from the states of Maharashtra, Himachal Pradesh and Goa and was subsequently adopted by every state apart from Jammu & Kashmir and Andhra Pradesh. Requested in 2011 and amended in 2014, states of Goa, Himachal Pradesh and West Bengal with many others adopted the act.
Following are the main provisions of the recent THOA, 2014:
1. Identification of brain death as the form of death made anyone a potential donor, deceleration of processes and criterion made it clear to follow. A mandatory form (Form 10) was introduced to declare someone brain dead.
2. It allows two types of organ and tissue donors: Living and cadavers (after cardiac arrests) — further classification of living donors as related and non-related donors.
3. The regulatory and advisory body was formed to monitor the transplantation activities, including the definition of each person involved and his responsibilities. This body will consist of appropriate authority (inspects and grants regulation to hospitals), advisory committee (experts domain) and authorization committee (regulates living donor transplantation).
4. Introducing swap transplantation wherein two different near related donors are deemed incompatible, they can swap their organs to help each other’s loved ones.
5. The deceased can authorise the organ donation before his/her death, or legal guardian can do the same after death. The act also defined the process of authorisation for unclaimed bodies,
6. Method and eligibility for registration of the hospitals as retrieval centres were established. Any hospital with ICU facility, along with workforce, infrastructure and equipment can register as an organ retrieval centre.
7. The recipient has to bear the expenses for organ management, retrieval and preservation. If he/she is incompetent to do so, he can get help from the government, NGO or society.
8. In medico-legal cases, the exact process was defined to avoid conflicts shortly regarding the donor’s body.
9. The act defined the exact structure of these retrieval, preservation and transplantation centres with the minimum infrastructure required and qualification of the personnel involved.
10. Transplantation coordinator appointment was made mandatory in all the transplantation centre hospitals.
11. NGOs working for and with organ or tissue donations are required to register on the national database.
12. The central government established National Organ & Tissue Removal and Storage Network (NOTTO), Regional Offices (ROTTO) and State Offices (SOTTO)
13. Central government declared that they would maintain a registry of donors and recipients of human organs and tissue to ease the process of finding the right person at the right time.
14. The act introduced the penalisation of any medical procedure regarding organ or tissue removal performed without authority with a detailed introduction of the punishments for making or receiving payments for supplying human organs or contradicting the act in any way.
Living organ donation:
Most of the organ donations in India are liver donations by living donors. As the name suggests, this happens when a loving person is willing to donate their organs for another person in need. The related living donor can be a family member like a parent, brother and sister, grandparents or grandchild. It can also be someone like a good friend, a neighbour or in-laws which comes under unrelated living donation.
A study revealed that 22.5% of liver live donors in India are recipient’s offspring and 40% of them were daughters, who were not even as the first choice while searching for donors.
Deceased organ donation:
With 0.8 per million deceased organ donor ratio in India, we have to go a long way to bridge the supply and demand gap of organs. In case of donations after death, the intensive care professionals have to identify one as a potential donor. To become a potential donor one has to be either brain dead or have a catastrophic injury to the brain which could progress beyond reversibility and may fulfil brain death criteria. This concept itself has been a bit of a debate in India, which leads to confusion and fear in intensive care professionals of being wrong.
India comes under the lowest actual deceased donor zone of 0.34 ppm which previously in 2013 was 0.8 ppm.
All the organ donations happening in India are mostly living organ donations, where are governed by a different set of rules. In India, 137.572 people die in road traffic accidents, and about 70% of them are declared brain dead. This is the pool from where they can derive most of the organs and increase the transplantation rate in India.
This is the second article of Organ donation knowledge sharing series, next article will emphasis on topics of brain death and types of family consents for the organ donation process.