I underwent a heart transplant in 2018 after facing end-stage organ failure since 2012. My heart’s pumping rate had fallen to 15% (as against the needed 65%), affecting my kidneys and making death seem imminent. I opted for an organ transplant, which is a life-saving intervention for patients with end-stage heart, lung, kidney or liver failure.
In a transplant, the diseased organ is replaced with a healthy one from a donor. With advanced techniques, life expectancy after an organ transplant can be 15 years, and for kidney and liver patients, it can exceed 30 years.
Preeti Unhale got her heart transplant done at AIIMS, New Delhi in 2001. She is the longest-surviving recipient in India to date. She’s a working woman.
Gazal got a donor heart when she was 13. Today at 18, she is a psychology undergrad whose hobbies include martial arts, classical dancing and driving, dispelling the misconception that it is just older adults who undergo a transplant. Many one-year-olds do too.
Ghazal. Photo provided by author.
The search for a matching organ
I enrolled in the National Organ Tissue and Transplant Organisation (NOTTO)’s registry as a potential recipient. Then, the search for a matching donor organ began.
The donor organ must meet several criteria: it must be from a brain-dead person under 55, match the recipient’s body weight, height, organ size and blood group. For instance, those with the rare O- blood type, universal donors, often wait longer than those with AB+, who are universal recipients. Matching is done through a computerised process at NOTTO.
Once a match is found, the recipient hospital is alerted, and a cardiac team travels to the donor hospital. However, the process is fraught with challenges.
I experienced three potential alerts. The first time, my hospital team travelled 700 kilometres to a Pondicherry government hospital, but returned empty-handed because of police permission issues. The second attempt was unsuccessful as the organ was deemed unfit. Finally, on the third occasion, the transplant took place on the night of October 4, 2018. Such external factors can complicate the aim of getting an organ on time.
The complexity of organ donation in India
The shortage of cadaver organ donations in India stems from a complex interplay of factors, including lack of public awareness, cultural and religious beliefs, inefficient hospital systems, legal and ethical barriers, insufficient infrastructure, financial constraints and psychological barriers. Addressing these issues requires a comprehensive and multifaceted approach to save countless lives.
Lack of public awareness
Organ donation and transplantation enable either a deceased or a living donor to offer life-saving opportunities to another individual. A healthy organ is extracted from a donor who doesn’t require it and transplanted into someone in need. Even individuals in good health can donate certain organs and tissues without compromising their own well-being, as with chronically-ill kidney and liver patients.
In India, the demand for organ donations far exceeds the available supply. Currently, over 300,000 patients await organ donations. The need is for 65 organs per one million population. Fifteen lakh deaths occur annually in road accidents, yet the government has not harnessed this potential because of a lack of public awareness.
Shomil, 34 received a double-lung transplant and waited 17 months for the organs. Photo provided by author.
In 2022, NOTTO reported 15,561 organ transplants, with only 2,765 from deceased donors. Living donors comprise 82% of all donors in India, most of whom are sisters, mothers and wives.
For instance, Tanuja Chaudhary donated part of her liver to her brother, Jayant Zambre, because of their close bond. Both are now doing well. Jayant has benefitted immensely from the transplant and is a successful chartered accountant in Thane and a two-time award-winning writer.
Tanuja donated her kidney to Jayant in 2011. Photos provided by author.
The deceased organ donation rate remains low. States like Telangana and Tamil Nadu have higher rates, partly because of dedicated teams and better infrastructure. Dr K.R. Balakrishnan, renowned cardiovascular and heart and lungs transplant surgeon at MGM Healthcare, Chennai, told me: “We get donors in Tamil Nadu almost every day now. There’s no shortage of hearts here. Lungs are universally less, because many of them are not usable due to injury/infection/aspiration from a head injury.”
Inefficient hospital systems and lack of infrastructure
The importance of skilled teams, trained staff and hygienic ICUs in creating a culture of trust and successful donations cannot be overlooked. Despite Rs 149.5 crore being set aside for the NOTTO program in the 12th five-year plan to promote deceased organ donation, success has been limited. Many hospitals lack the transplant infrastructure, and staff are often overworked and focused on critical patient management.
A widespread lack of awareness persists among the public and within medical circles. Many individuals, including healthcare professionals, need more knowledge about donation and the legal definition of brain death. Misconceptions and mistrust of the medical fraternity further hinder donations.
Dr Sunil Shroff, a leading nephrologist and transplant surgeon, suggests revisiting the definition of brain death and de-linking it from organ donation to avoid ambiguity. He advocates for stem-cell death to be considered as brain death, with a clear ‘no touch time’ stated in the law.
Cultural and religious barriers
In India, both the donor’s and the family’s wishes count. Families often get emotional and angry and refuse to donate their relatives’ organs.
Cultural and religious beliefs, such as concerns about the donor organ entering the body of someone with bad karma, the caste of a donor being lower than the recipient’s, or the donor being born with a mutilated body contribute to this reluctance. Mistrust in the healthcare system also plays a role.
Although Balakrishnan explains brain death as the cessation of brain function despite a beating heart, likening it to a damaged CPU in a computer, yet misconceptions persist, and individuals resist registering for organ donation.
The illicit organ trade has created the impression that organs primarily benefit the affluent. It is not so. Poor and middle-class patients rush in large numbers to expensive quality hospitals, borrow extensively and pay exorbitant amounts to save their loved ones.
Also read: The Ins and Outs of Organ Donation
Sangeeta Mishra, a schoolteacher, and her husband, a machine operator, had to borrow huge amounts to pay for the organ transplant of her five-year-old son. She is still struggling to return the loan and stressing over finding Rs 25,000 every month for his medicines, blood tests and doctor check-ups. She has another son to look after too, she says, and is at her wits’ end needing to find the money year after year.
That’s why she is determined to speak about her financial problems after her son’s transplant during a meeting with the Union health minister sought by a group of petitioners comprising recipients and donors from across India.
Legal and ethical barriers
Legal and ethical barriers contribute to the shortage of cadaver organ donations. The Indian government is aware that the number of donors is a mere one per million population, far below the needed 65 per million. Inefficient hospital systems and a lack of infrastructure contribute to this shortage and compel patients to enrol at the few available transplant centres at a price.
Psychological barriers and misconceptions
Grief-stricken families often refuse to donate their deceased relatives’ organs, hoping to keep the patient alive using life support. They don’t realise that organs become damaged if kept on a ventilator beyond a period of time as per medical advice. A brain-dead patient is certified twice by a special team of four doctors, including a civil surgeon, to ensure the person is dead. Yet, mistrust of the medical fraternity persists.
The need for a comprehensive policy review
While NOTTO has regularised the sharing of organs, the government needs to review transplant policies holistically. Empowering NOTTO to implement its commitments, as declared in their Transplant Manual 2022, is crucial. Setting up fully equipped, affordable transplant centres with well-paid, motivated doctors and trained staff across every state is necessary.
Additionally, the government should offer financial aid and free medication, fund post-transplant treatment to recipients regardless of their state, provide funeral aid to donor families and honour donors nationally to inspire other donors.
Ensuring that medical insurance companies issue policies to post-transplant recipients is also essential. But unfortunately, insurers are flouting every regulation of the IRDAI in this matter to deny health policies to post-transplant recipients, causing them further monetary hardship.
Conclusion
Addressing the shortage of cadaver organ donations in India requires a multifaceted approach. Public awareness campaigns, efficient hospital systems, comprehensive policies, medical insurance policies, addressing cultural and religious barriers and so on are all crucial steps.
As more transplants occur, awareness of the life-saving role of cadaver organ donation will grow stronger than any campaign. By working together, we can overcome these challenges and save countless lives.
Dr Viney Kirpal is former professor of English, IIT Bombay, a published health writer and heart transplant recipient (2018). She can be reached at vineykirpal@gmail.com.
Today, August 3, is organ donation day.
