A gift of life

Aditi Tandon in New Delhi

Indian families have begun to shed their inhibition towards organ donation, but, the pace of change remains excruciatingly slow. The fact that organs from one deceased person can save eight lives is not enough for people to sign off vitals of wards who die in road accidents and other events.

That explains why the Indian rate of deceased organ donation is among the lowest in the world. It stands at less than one per million people as against the best in the world, such as Spain and Croatia, where the corresponding rates are 46.9 and 38.6 per million respectively.

Last year, India signed an MoU with Spain to replicate the Spanish model of organ donation. Results from that effort will be visible by the next year. Until then, awareness on organ donation will continue to hold the key.

“Indians show a lot of reluctance in consenting to organ donation. The primary deterrent is myths and misconceptions around organ donation, religious beliefs, lack of knowledge on organ and tissue donations and the stigma associated with the concept. We are now stepping up awareness through engagement with diverse communities of students, doctors, paramilitary forces, chartered accountants and bank employees. Our best partners in the cause are the families that have opted for deceased donor organ donation,” says Vasanthi Ramesh, director, National Organ and Tissue Transplant Organisation (NOTTO), the apex body under Health Ministry tasked with the promotion of organ donation.

NOTTO runs a national registry of organ donation where 14 lakh living donors have pledged a range of organs. Considering the Registry was set up in 2015, the number of pledges is very low with NOTTO now working with State Organ and Tissue Transplant Organisations to promote online pledging of organs.

Medical experts point to two types of organ donation that people can do. The first is living donor organ donation, which can be done by any person above 18 years of age during their lifetimes.

The second is deceased donor organ donation in which the family members of the person who has suffered cardiac or brain death can donate multiple organs. “One deceased can donate a heart, two lungs, two kidneys, pancreas, intestines and parts of the liver,” says transplant coordinator at a Delhi hospital.

As deceased donor organ donation happens from a brain dead patient with a beating heart on life support system, many misconceptions surround it. However, recent trends reveal slight improvements in deceased donor transplants which can transform India’s position on the world organ donation map. Effective medical counselling of families at the time of brain death of wards is aiding positive trends.

Panchkula-based Rajbir Singh Pawar lost his 23-year-old son Atul Singh Pawar in an accident in September 2017. “We were counselled by doctors at Kochi to donate his organs. It took us some time to accept the suggestion but seemed like the right thing to do. We donated his heart, liver and two kidneys. Today, four people are alive because of our son who was a blood donor all his life,” says Rajbir Singh.

Atul Pawar was the first commissioned Navy officer whose organs were harvested after death. He was a sub lieutenant in the Navy at the time of the accident and was deployed on INS Dronacharya. Today, his family is proud of the son’s legacy. “We are happy that our son lives on in so many people. I am also a regular blood and platelet donor,” Rajbir Singh says.

There are others in the league spreading a word about organ donation. Bharatpur-based Anil Kumar, who donated the heart, liver and two kidneys of his daughter, Deepti Gupta, after she died in a road accident on July 29, 2017, has a message for people. “Every family should approach the subject of organ donation with an open mind and heart. Donation provides an unparalleled opportunity to give someone a second life. My daughter’s organs saved five lives,” says Anil Kumar.

But such level of awareness is low. On July 8 this year, the 25th anniversary of the Transplantation of Human Organs Act, NOTTO undertook the challenge of mobilising one million online organ donation pledges among one billion Indians. “We could manage only 746 pledges in a day,” says NOTTO chief Ramesh, adding that the process of compilation of pledges from across India through state-level organisations was still underway and figures would improve a bit.

As for general public, not many know how they can pledge organs or that organ donation is a pressing future need as India’s non-communicable disease burden rises and road accident rates mount.

In 2018, the country saw 4.61 lakh road accidents involving 1.49 lakh deaths. With satisfactory deceased organ donation awareness, medical experts can save eight lives from each road accident deceased, provided the families cooperate.

However, the gap between annual demand of organs for transplant and their availability is too huge to meet. Government data shows that every year the following number of persons need organ and tissue transplant: kidneys (2.5 lakh), liver (80,000), heart (50,000), cornea (one lakh).

Now picture the actual number of organ transplants done annually: kidneys (160), liver (33), heart (45) and cornea (2,188).

A random survey by NGOs involved in organ donation recently found most people don’t even know they can donate organs while they are alive.

“There are two kinds of organ donations. One is deceased organ donation. The other is living donor organ donation. The latter means any person above 18 years can donate one kidney (the other is capable of maintaining body functions); a portion of pancreas (half the pancreas are enough to sustain required functions) and a part of the liver (segments of liver will regenerate after some time in both the donor and the recipient) in their lifetime,” says Dr Poorva, who works in the organ donation sector.

It remains to be seen if society will respond to this pressing call for organ donations. The government, meanwhile, continues to feel the absence of a suitable brand ambassador for the cause. When actor Aishwarya Rai pledged her eyes a few years ago, corneal donations rose briefly only to hit a plateau later. 

Overall, the sector is yet to find the brand ambassador who can give the cause of organ donation its due. As Ramesh says, “We may consider having a brand ambassador when we find a person committed to the cause.” The government hasn’t found anyone yet.

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WHAT CAN BE DONATED

Organs: Liver, kidney, pancreas, heart, lung, intestine.
Tissues: Cornea, bone, skin, heart valve, blood vessels, nerves and tendons, etc.

AGE LIMIT 
Living donor should not be less than 18 years.
Deceased donor can donate within the age limit of: Kidneys, liver: up to 70 years; heart, lungs: up to 50 years; pancreas, intestines: up to 60-65 years; corneas, skin: up to 100 years; heart valves: up to 50 years; bones: up to 70 years.

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TYPES OF ORGAN DONATIONS

Living donor: An 18 plus person, during his life, can donate one kidney (the other kidney can maintain body functions adequately for the donor), a portion of pancreas (half of the pancreas is adequate for sustaining pancreatic functions) and a part of the liver (the segments of liver regenerate after a period of time in both recipient & donor).

Deceased donor: A person can donate multiple organ and tissues after brain-stem/cardiac death.

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HOW TO GO ABOUT IT

You can pledge organs online through NOTTO website www.notto.gov.in. Or, visit www.notto.gov.in, click on “MILLION PLEDGES”, download Form 7, fill it and email to [email protected]. Alternately, click on “DONOR PLEDGE” link, login and fill Form 7 online and submit. Donor card will come on email. One can also pledge offline through filling up of Form 7 and submitting the physical copy to NOTTO office. A donor card will be dispatched to the donor’s address.

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FAQs

Can you unpledge after pledging?

Yes, by visiting www.notto.nic.in and pressing the un-pledge option.

Which end-stage diseases can organ transplant cure?

Heart failure, terminal lung illnesses, kidney failure, liver failure, diabetes, corneal blindness, heart valvular disease and severe burns.