August 13 is marked on calendars, all around the world, as Organ Donation Day. Today, appeals for donating organs will be made, organ donors will be felicitated, and organizations in this field will be recognized. So far, so good. But what is the real state of organ donation in India?

Organ donation became a legal reality in India in the 90s. But even today in 2020, why is the rate of organ donation so low? Why are there lopsided statistics even within the donors and the organs being donated? ImpactGuru connected with Apollo Hospitals (Navi Mumbai) to understand the current state of organ donation in India. Here are some excerpts from our conversation.

In the present circumstances, how is your hospital still managing to make organ donations possible?

Apollo Hospitals, Navi Mumbai is strictly adhering to the guidelines shared by NOTTO and SOTTO in organ donations during Covid-19 pandemic. Patients getting admitted with severe trauma, poly trauma, Intracranial Bleed, Brain Haemmohrage etc. with evidence of clinically proven as brain dead, are being considered for organ donation. The relatives of such patients are being explained by Clinical Team and the decision for organ donation are given as an option to the family once the clinical team found that the patient can’t recover and has gone into brain dead clinical condition. 

The team follows the protocols such as; evaluating the conditions of the organs, conducting Covid Testing (RT-PCR) and sharing the details with ZTCC. Once, the quality of the organs are found fit to be utilized and Covid test reports have come NEGATIVE, then the allocation of the organ by ZTCC takes place. Organ donation during Covid-19 pandemic can continue and the utilization of the organs would be ascertained based on the Covid-19 report of the donors.

India is said to have one of the lowest rates of organ donation in the world. Why do you think that's the case?

The overall organ donations in the world in the year 2018 was 38,594, whereas India has contributed only 875 in the same year which is just 2%. Yes, this number is dismal compared to the global donations. However, the number in India is growing every year (2010- 100; 2011- 391…. 2018- 875). India’s organ donations have grown from 100 in 2010 to 875+ in 2019 which is almost 10 folds in the last 10 years.

The main reason for less number of organ donations despite the available opportunities is lack of awareness and enthusiasm amongst the key stakeholders. Spain reported generating the highest number of cadaver organs in 2018 and the reason behind this is the donors’ consent mentioned over their driving licenses. The Government medical agencies are not supposed to take any consent from the family/ relatives when they find any such potential donors. If the patient is found brain dead as per the defined guidelines, then the organ donation will automatically take place.

Whereas in India, the hospital authority has to take consent from the family/ relatives for organ donations which in most of the cases is NEGATIVE. Very few educated individuals who understand the importance of organ donations come forward and give consent for the same.

There are so many social, religious, spiritual myths prevailing in the society that discourage Indians to advocate organ donations.  

Even within organ donations, there are rather curious statistics. As per NOTTO (National Organ and Tissue Transplant Organization), there are 5 times more female donors than male. There are also 10 times more living donors than cadaver donors. What do you think explains this?

India is a unique country, full of dissimilarities as far as beliefs are concerned. Different religions hold different thought processes and follow different beliefs. Ours is a male-dominated society in which the male is considered as head of the family and the driving force and only earning member of the family. Though, the scenario is changing gradually, the male dominant mentality in a family is a common phenomenon. In fact, the women who are also emotionally more connected with their family members and counterparts, come forward for taking such a step. They prefer to be considered as the first donor in the family for their son/ husband/ parents and if found clinical unfit, then only the next person (male) is considered, that too when the other females are not available.

India is a developing nation and there are many reforms undertaken in recent past which are showing results. One of the reforms is promoting Organ Donations across the length and breadth of the country. Earlier, before 2015, the cadaver organ donations were mainly taking place in the southern part of India namely Chennai, Hyderabad, Bangalore etc. However, in the last 2 to 3 years, many states have taken this initiative of promoting organ donation and setting-up governing bodies to monitor and facilitate organ donations in places such as Maharashtra, Madhya Pradesh, Gujarat, Rajasthan, West Bengal, Chhattisgarh, Delhi etc.

As per NOTTO, the highest number of transplant cases - since 1995 - have always dealt with the kidneys, almost 3 times more than the liver. Why do you think that's the case, and will our present lifestyles only make this a permanent reality?

The number of kidney transplants performed in India every year is greater than liver transplant. One of the biggest factors for this big difference is COST. The cost of Liver Transplants in India is 3 to 4 times more than the Kidney Transplants. There are many liver patients in India who just die due to unaffordability. The patients undergoing organ transplants are also advised to take life-long precautions/ medications/ follow-ups which will again be additional expenditure. 

India made transplantation of human organs a legal reality in 1994. 26 years later, do we need more laws, or is there something else that has to be changed to make organ donation a more acceptable practice?

Indian THOTA (Transplantation of Human Organs & Tissues Act) needs modifications due to its growing need and wider implementation across the country. Though, India has THOTA which is nationally looking after the programme, the larger part of its implementation depends on the State’s interest. There are many states which are silent and are not doing enough to promote and implement Organ Donations.

Moreover, there is lack of clarity in taking out and utilizing organs which are marginal in nature. Also, the current law does not allow withdrawal of life support in the end-of-life situation (imminent cardiac arrest in intensive care set-up). 

How has your hospital helped make organ donation an easier process? Have there been cases where you have helped people be the beneficiaries of a transplant, and then they/their family members came forward to donate their body organs?

Organ Donation is pious work in which people come forward voluntarily and pledge to donate their loved ones’ organs for saving precious lives in need. The treating consultant along with the Intensive Care team try hard to save lives in the severe injured/ IC bleed/ brain haemorrhage cases. After applying every single hope to save their lives, if the team found that the patient is not recovering or, not likely to recover come what may, then the same is discussed with the relatives. To ascertain the clinical findings, the team conducts FIRST Apnoea Test and establish the clinical judgement based on this test. The same is intimated to the family with a hope to help others by donating organs. If the family agrees after having internal discussion amongst all the members, then the same is conveyed to the clinical team by them and the team involves Transplant Coordinators. The coordinators start making required formalities and await for SECOND Apnoea Test. If the 2nd Apnoea test is POSITIVE and the same is communicated to ZTCC and organ retrieval/ allocation starts.

What has been the most challenging transplant case that your hospital managed to make a reality? Can you talk more about it?

Apollo Hospitals, Navi Mumbai has witnessed 2 in-house cadaver organ donations in lockdown period (one in March and another in July). The one generated in July had multiple challenges associated with it. This was a young lady who had very recently delivered a baby and within a month developed some complications, needed ICU care; sadly she could not be saved. The NOTTO guideline says to conduct RT-PCR for donors as well as recipients. Ideally, this test takes 24 hours time for reporting. Moreover, since the mother mortality was reported within 1 month of the delivery, as per directives of DHS, the case had to be registered in Police as an MLC case. The family became very distressed and decided to withdraw the consent. However at the end, the family finally accepted the process and agreed to complete the legal formalities and donation took place.

The gap between medical diagnosis and the actual transplant sometimes takes years altogether. In many cases, the bills in this period here are almost as heavy as those of the transplant. Why so?

Organ Transplant is a very serious profession and needs to follow various guidelines. Small negligence can lead to fatality and we may lose the patient. There are different types of organ failure cases - chronic, acute-on-chronic liver failure or, acute organ failure, each one needs different approach in the clinical/ surgical management. The chronic patients can wait for some time to undergo Transplant, whereas ACLF/ ALF can’t. The reason is simple that the liver disease is so advanced that we can’t wait, at times even for 24 hours to 48 hours. Chronic patients need medical management initially, as also strong monitoring. With strong medical management and aggressive treatment, we may prolong the transplant. In managing these cases, the patient's family needs finance. Sometimes, these patients need ICU admission and highly costly medicines/ infusions to salvage the condition. These all add to the actual cost of the treatment i.e. transplant.

What would your message be to people who are still unsure of organ donation?