To be sure, deceased donation is the process of giving an organ or a part of an organ at the time of the donor’s death for transplantation in another person. There are fewer deceased donations in India, unlike in the West.
Data from National Organ & Tissue Transplant Organisation (NOTTO), a government body under the ministry of health and family welfare, shows there were just 941 deceased donors in the country in 2022 versus 930 in 2016. Total transplants grew from 9,022 in 2016 to 16,041 in 2022. Yet, the number of patients waiting for a transplant continues to grow astronomically.
“Consolidated data on organ donors is not publicly available. We work with guesstimates of 500,000 individuals suffering from organ failure, with around half of them on dialysis, 150,000 suffering from liver failure and 100,000 from heart, lung and other vital organ failure,” says Jaya Jairam, project director at MOHAN Foundation, a non-profit organization that works in the field of deceased donation. Jairam, a recipient of an organ donation, works to spread awareness about deceased donation.
Separately, awareness drives on organ donation by the government, NGOs and individuals is helping the cause. The number of people who have pledged to donate their organs after death has reached 466,055, shows data from NOTTO, which maintains a database of all pledges. But that number is just not enough to meet the demand for organ transplantation. Moreover, not all deaths qualify for organ donations. Vital organs such as heart, lung, kidneys and pancreas can only be harvested from people who have been pronounced brain-dead by doctors.
Dr Nimesh Mehta, an ophthalmologist, says fewer than 4% people die in a hospital, after they are on a ventilator, in a manner that has the potential to facilitate organ donation. These include the terminally ill or people who sustain fatal injuries in a road accident and die after admission to a hospital .”
To be sure, there is a time limit for harvesting the organs and transplanting them. “It is the least in case of heart and lungs (about 4-6 hours). For liver and pancreas , it is 24 hours and for kidneys, it is up to 72 hours,” Mehta says. “In the case of those who have taken an organ donation pledge and die a natural death at home, the harvesting cannot be done unless the family informs the hospital or NGO concerned about the death immediately. Tissues like corneas, heart valves, skin, bones, etc, can still be harvested even if there is some delay,” he adds.
Medical experts say that a single body, or cadaver, donation can save up to eight lives and impact more than 75 others.
Take a pledge, create a living will
Medical tests are not required to register for organ donation. Those who wish to donate their organs can fill up the pledge form on NOTTO’s website. One can also do so via registered non-government organizations (NGOs) or authorized hospitals. But a pledge alone doesn’t guarantee organ donation. Hospitals still require the consent of the deceased’s family. “The pledge form requires you to mention at least one family witness and their contact number. First, convince your family members so that in your absence they are mentally prepared to make it happen,” says Kamal Khurana, general secretary at Dadhichi Deh Dan Samiti, an NGO.
A living-will is another way of donating your organs or your entire body. It is a legal document of an advanced medical directive in which individuals can express their desire for future medical action against end-of-life care if they go into a coma. For example, they can decide on whether they want to be kept alive with life-support equipment. “Not many people are aware that they can include organ and tissue donation in their living-will,” says certified financial planner Viresh Patel who has drafted his own living-will. “It’s better to include it in the living and regular will both. Also record a video and provide its details in both wills” he says.
Organizations such as Aasaan Will, Yellow and estate planning firms can help you create a living-will. You need to name an executor (preferably a family member) in the document who will execute the living-will in your absence. “It must be attested by the executor, two independent witnesses, and countersigned by a notary or gazetted officer,” says Niranjan Vemulkar, CEO, Yellow, a digital will-making platform.
“The awareness around organ donation is a crucial part of our message when we discuss legacy planning with our clients. Conversations with close family members are the most important part of the process. We also advise them to share their wishes with doctors and designated local government officers through a living will document. It is crucial that all important stakeholders are aware of your wish to donate organs after your death,” he adds.
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Fewer pledges, many challenges
An Edelweiss Tokio Life Insurance’s 2019 study, conducted in association with Karvy Insights, shows that a majority of the people are aware of organ donation but only 35% understand the process. While 67% believe that it is important, 24% are willing to donate their organs, and a meagre 3% have registered with an authority.
Even in cases where people have pledged their organs, their family members offer resistance for various reasons, beliefs and even superstitions about body mutilation. Some are even worried that they may be asked to pay for the costs of the ventilator. “In the case of an organ donor, the family doesn’t have to pay anything. After the organs are harvested, the body is returned to the family with all due respect,” says Jairam.
In case of people who donate their bodies for research purposes, the cadaver is given to a medical college.
There are other challenges as well. One is infrastructure and logistics. Harvested organs may need to be transported to different hospitals, sometimes from one part of the country to another within the set timeframe. This is a hurdle in case of accidents in places without good connectivity. “Not all hospitals are equipped to declare a patient brain-dead. Also, though we have green corridors and chartered planes for quicker transportation of organs, we need better inter-state coordination,” says Khurana.
Separately, NOTTO launched a new Aadhaar-linked organ and tissue donation pledge registry last month to enrich its database for faster dissemination of information across stakeholders.
The insurance puzzle
Organ transplants are an expensive affair. Earlier, health insurance policies only covered the recipient’s medical expenses in cases of transplants. Now, donor expenses are covered under the same policy. Some insurers may require you to buy a separate critical illness rider to cover organ transplantation.
“Donors don’t have to pay anything for organ donation. The recipients’ policy will take care of that. However, the cover will be restricted up to the sum insured. Some insurers offer reverse coverage as a goodwill gesture. This means if the recipients do not have a policy or have exhausted their coverage, the donor’s insurer may agree to cover the costs,” says Amit Chhabra, chief business officer, PolicyBazaar.com.
The goodwill gesture, though, is uncommon. Rohini Deepthi Natti (38) donated 65% (one lobe) of her liver to her dad in December 2019. Natti and her father both had individual insurance policies. Rohini’s insurer had initially told her that the policy covered all her expenses but later denied the claim. “They told me donor’s insurers don’t cover organ transplants. I had clearly explained my case before the transplant and yet the insurer misguided me. Had I been aware of the clause, I could have included my expenses under my father’s policy,” says Natti.
Can organ donors get a fresh policy or port the existing one? That, say insurance experts, is a difficult proposition. Natti could not port her policy. “They told me that liver-related diseases will not be included in the policy if I port,” she says.
Chhabra says the policy coverage depends on underwriting norms of an insurer based on the medical history of a customer. “Organ donors may still get the policy but it’s harder for recipients,” he says.
Rahul Kumar Prajapati’s is a case in point. The 29-year-old had a heart transplant surgery in 2018. Despite leading a healthy life since, he has failed to get a health insurance policy.
The same applies to life insurance. “Not enough data is available to analyse mortality issues. But we don’t deny covers to donors. They may have to go for additional tests and pay some extra premium or a longer waiting period for diseases linked to that organ,” Anup Seth, chief distribution officer at Edelweiss Tokio Life Insurance.
Jairam of MOHAN Foundation says the organization is working with insurers to quantify risks in providing medical cover to both organ donors and recipients.