Anika Parashar Puri, a Trustee of Parashar Foundation and the founder of ORGAN (Organ Receiving and Giving Awareness Network) India, takes us through the current scenario of organ donation in India and tells us why there is a huge gap between the number of organs donated and the population in our country.

As a cause, Organ Donation is one of the most neglected in the world, especially in India. Every single year, half a million people need transplants in India and we still lack a system which matches recipients to donors transparently and effectively. We still don’t know where to go for which type of transplant as there is no central hub of information. We still don’t know what the process of donation is, that brain death is in fact irreversible and that there are so many myths around organ donation which prevent us from simply signing a form of intent to save multiple lives upon our deaths.

We are not aware that all it takes is signing up for a donor form to express our intent to be a donor should we be in a position to donate upon death. We are not aware of the importance to intimate our families of our wishes so that they fulfil them should they be in the position to. The most crucial thing that we are still not aware of is that every single organ donor can save upto 9 lives and enhance many, many more.

The Scenario
Currently, our country is in a dismal state when it comes to meeting the demand for organs required to save lives. Although there are excellent surgeons and fantastic hospitals with brilliant infrastructure and technology in both the city and country – there are hardly any organs available for transplantation. There are lakhs of people waiting for a transplant and there need to be equal amount of donors to be able to fulfill this need and save lives.

Some important facts to know:

• Organs are used to save lives by replacing diseased organs with healthy one.
• At least 7 lives can be saved by organs harvested from one donor
• At times some organs are not suitable for transplant even if the family has agreed to donate the following – heart, kidneys, liver, lungs, pancreas, small intestine
• Such life saving organs can only be donated in the case of brain death whereas tissue can be donated after cardiac death as well.
• Tissues that can be donated are – skin, bone, corneas, heart valves, veins.
• One set of corneas are given to two people needing sight.
• Heart valves are used in valve replacement surgery, common in children.
• Skin grafts are used for burn victims
• Bone, tendons and ligaments can be used in reconstructive surgeries.

The problem
Why is there such a gap in a country with 1.2 billion people? Too many reasons to count. As Indians, we don’t know enough about what organ donation is, to be able take a stand and pledge our organs. We don’t know what the process is or what will happen after we sign a donor card. We have no clarity on what happens to us once brain death is declared.

We worry about the hospitals not working hard enough on us simply because we are organ donors. There is no clear directional information which tells us which hospitals perform transplants, who the surgeons are or where we can sign up as potential organ recipients. It is difficult to even figure out where to register and pledge our own organs for donation.

The road to finding a solution
On a larger level, the healthcare providers in India work individually rather than in a collaborated manner, which is the norm in countries like Spain and the United States. Such countries have a proper network in place to make organ allocation and sharing more efficient and effective.

In India there is little initiative to create awareness or set up a centralized organ donation system. There is no mandatory certification of brain death in hospitals, families do not understand that there is very clear cut scientific criteria which defines brain death – a condition which is irreversible. Perhaps if families were more aware of this, they would be more aware and more open to giving critically sick people life even in the face of their own devastating grief.

Organ Receiving and Giving Awareness Network
As a family, with this cause so close to our hearts, we wanted to do something about the current apathy towards organ donation and awareness. We do not want others to suffer the same frustration and helplessness that we felt. We are committed through our family foundation, The Parashar Foundation, to work towards bettering the organ donation situation in India. Hence ORGAN India (the Organ Giving and Receiving Awareness Network) came to life last year.

In another step towards educating the public, we have produced a film on Brain Death which has been given to all the hospitals in Delhi NCR with the aim of sharing it with hospitals across the country to aid in helping families to understand the process of Organ Donation. We have already commissioned and completed the first comprehensive research on Organ Donation in Delhi NCR to gain a complete understanding of the scenario.

In the last few months, we have also created a digital footprint as well as made in-roads into several corporates to spread awareness. Our large-scale awareness campaign launch is planned for next year, with the hope of making serious inroads into raising araewness for organ donation.

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Anika Parashar Puri
Founder, ORGAN India

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