Despite many attempts to create awareness around organ donation, it remains a big taboo in India. Many lives could have been saved had those patients, who needed organs, got them in time. Recently, a video on social media went viral. It showed a woman named Archana Kamath, a 33-year-old lecturer from Mangaluru, who died after donating part of her liver to her husband’s aunt.
It brought the risks of living-donor liver transplants into sharp public focus.
Archana’s death, allegedly attributed to an infection, sparked a firestorm with reactions ranging from sympathy to conspiracy theories and accusations of coercion due to her being a woman.
However, the more extreme comments from the social media users included statements like – ‘Archana was murdered,’ ‘older generation should be gracious to reject organ donation from younger generation,’ and ‘elderly women did not have the right to live and must accept death.’
#Archanakamat
ನಿಮ್ಮ್ ಆತ್ಮ ಆ ಭಗವಂತನಾ ಮಡಿಲಲ್ಲಿ ಚಿರಶಾಂತಿ ಅನುಭವಿಸಲಿ 🙏 pic.twitter.com/j3IzuMeiZj— 𝗚𝘂𝗿𝘂🇮🇳 (мσ∂ιʝι кα ραяιναя) (@Gururaj1972) September 21, 2024
Her death highlights several issues related to organ donation in India, including the dominance of living-donor transplants and the underdeveloped deceased-donor system. In developed countries like the United States, organ transplantation is centrally managed, with organs from brain-dead donors being allocated through a national system. The United Network for Organ Sharing (UNOS) ensures that organs are distributed fairly and efficiently across the country.
In India, however, organ donation and allocation structures are fragmented with each state managing its own organ transplant programs. This essentially means that liver transplantation programmes in India are highly disproportionate, not publicly-funded, and almost wholly captured by the private health sector.
The costs of surgery are unfair and uneven between hospitals within the same region and between states.
Even the donor-pool is inconsistent. Thus, the organs or (part of organs) extracted from those who are alive outnumber those which come from the deceased. As a result, many patients in India rely on living donors, which increases the burden on individuals like Archana, whose tragic outcome has opened a Pandora’s box.
The discussion around it showed how an average Indian citizen views liver transplantation and the lack of humanism and impact of science-illiteracy.
Ageism and the right to life
A key issue raised by Archana’s death is the societal bias against older patients receiving organ transplants. Ageism, or discrimination based on age, is a deeply ingrained issue in many cultures, including India. Some online commentators argued that older people should not receive organs from younger donors which contradicts the principle of equal access to life-saving treatments.
A woman’s average life expectancy is approximately 70 years in India. And, the aunt of the woman, who received the organ and who had end-stage liver disease, was 65-years-old. Thus even if we go by the average life expectancy. Therefore, she has the right to live and the right to choose a treatment that would increase her odds to live.
Gaslighting the patient and family, as per majority of responses to the post indicate, for choosing what was their optimum for her health, does not change the fact that even elderly patients have the right to life and tertiary care.
Moreover, the older patients often have similar survival rates after liver transplantation as younger patients.
Living-donor liver transplantation programmes typically look for potential donors within the recipient’s immediate family such as a sibling, parent, child, spouse, relative or close friends. Unrelated donors must obtain approval from a state regulatory committee to ensure that there is no financial coercion or other unethical practices involved. Therefore, Archana might have been a suitable donor for her aunt.
While some questioned whether Archana had been coerced into donating part of her liver, the absence of concrete evidence makes such claims speculative. What is certain, however, is that gender disparities in organ donation are a widespread issue, both in India and globally.
In India, four out of five living donors are women, whereas four out of five recipients are men. This gender imbalance raises concerns about societal pressures that may disproportionately affect women in such situations. In India, the MOHAN Foundation’s report highlights the “breadwinner dilemma,” which contributes to men’s hesitance to become organ donors. Additionally, because men are often seen to serve as the primary earners in their families, there is an increased sense of “responsibility” among family members, particularly women, to donate organs on behalf of these men.
Also read: Why India Faces a Shortage of Cadaver Organ Donations
The larger problem: A system in need of reform
While Archana’s death is a tragic anomaly, it underscores a larger systemic issue in India: the disproportionate reliance on living donors due to an underdeveloped deceased-donor program.
In 2023, 90% of the deceased donors in India came from just five states. What about end-stage liver disease patients facing an imminent death in other states? What about their families who were readying themselves about the imminent death of their loved-one because the system is not aggressively empathetic? Many other regions lack the infrastructure, expertise, and public awareness needed to support robust liver transplant programs.
As a result, patients in these areas face a higher risk of dying while waiting for a liver transplant. The lack of a national organ allocation system exacerbates these disparities, leaving many patients with little hope of receiving a life-saving organ in time. The opposite is also true.
If one thought that the gender disparity only existed with women forming the major share of pie in the donation, then it must be known that the disparity extends beyond this.
A woman with end-stage liver disease is less likely than a man to be listed for liver transplantation. This is not indicative of the fact that women are less prone to disease but that the woman, in the first place, doesn’t even get listed to receive the organ, or a part of it.
Even when listed, they face higher chances of remaining on the waitlist without receiving a transplant, experiencing deterioration, or even dying while waiting. A key reason for this disparity lies in the MELD score used to assess liver disease severity for organ allocation.
The MELD score is a number between 6 and 40, calculated from lab tests which measures how sick the patient is and shows how urgently they need a liver transplant. A higher score indicates a greater need for the transplant.
The original MELD score tended to underestimate the severity of liver disease in women. To address this imbalance, the MELD 3.0 was introduced recently, giving women an additional 1.3 points to ensure a fairer allocation process.
Small but effective changes to bridge the gap on gender disparities when it comes to transplant surgery and donation is ongoing in the developed countries, while in India, such programmes see an expansion of discrepancies in treatments offered and received, and widening lack of awareness on the importance of organ donation.
The system killed the donor
Deaths from living-donor liver transplants are extremely rare, with an overall donor mortality rate of just 0.06%. While living-donor liver transplants save lives, they should not become the default option due to systemic failures in the deceased-donor program.
A more robust deceased-donor system could reduce the pressure on living donors, prevent tragedies like Archana’s, and save more lives overall. Maybe Archana volunteered wholly out of love, to be the donor for her husband’s aunt, who was on the waitlist for almost 18 months without receiving an organ.
The transplant system in India has nearly normalised the death in many parts of the country due to a long wait-list and her time was running out. Out of love, knowing that her mother-in-law would lose her sister, Archana acted selflessly, unlike those who might conclude that her extended family or husband were being selfish.
Archana is survived by her husband and their four-year-old son. My heart goes out to the little one who lost his mother to a selfless act. Archana is not their hero, she was family. And in family, selfless acts are not heroic, but compassionate.
We are still unaware of the medical causes or other reasons behind the death of the donor. The system in India is wired to create more living donors like Archana, instead of creating more deceased donors who would give back to the community, even in death.
Let us pledge our organs for transplantation should death come to embrace us, silently, and untimely, so that we can prevent more Archana’s from donating. We must not use this unfortunate story to damage organ donation programs across the country because more lives will be at stake.
The organ transplantation saves lives and is needed for many to survive and live beyond their liver disease and grow with their family. The children would love their mothers to live longer, but mothers also love to see their children, and their children, living and thriving. As Carly-Jay Metcalfe said, “learning to live with the guilt of my organ donor’s death is to have finally come to realise that striving to live well is the ultimate act of love.”
Dr Cyriac Abby Philips, popularly known as ‘The Liver Doc’ on social media, is senior consultant in clinical hepatology and liver transplant medicine at The Liver Institute, Rajagiri Hospital, Aluva, Kerala. He can be reached at abbyphilips@theliverinst.in.
