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Getting organ donation to tick again

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Addressing the trust gap and inequality that are impacting family consent for organ donation is crucial

Organ donation day is observed with the primary objective of promoting organ donation and transplantation so that a number of persons suffering from organ failure, such as the kidneys and liver, can get a new lease of life using organs gifted by others who have lost their lives (such as in road accidents or other reasons).

Undermining altruism

As the country honours the donation process, and distributes awards to donor families — Indian Organ Donation Day is observed by the Government of India on November 30 — it also needs to reflect on certain negative perceptions that appear to be growing and undermining the altruistic donation mindset of donor families. A classic example of this is the steep drop seen in Kerala — from 76 deceased donors in 2015 to eight in 2018 — due to a perceived, however unfounded, scandal that private hospitals were declaring persons brain dead when they were not really so, in order to retrieve their organs and profit from them.

The underlying factor is the highly privatised health-care system in India and the growing trust gap between patients and doctors trapped in the profit-seeking business of tertiary care; seeking second and third opinion on patient treatment is commonplace today. While an organ comes free, as donated to society, transplanting it to another person costs anywhere between ₹5 lakh and ₹25 lakh, including profit to the hospital. Hence the unavoidable suspicion that unethical practices may take place — as highlighted in a recently published book, Healers or Predators? Healthcare Corruption in India. There is one more factor. The reality that a majority of accident victims who become donors are lower middle class and below, while the majority of organ recipients are from the small number of persons who can afford transplant surgery and costly lifetime medication thereafter. The cost factor is the key reason why more than three quarters of donated hearts and lungs do not get taken.

Public hospitals cannot help

A common solution to this, advocated by many, is that public hospitals should chip in and help the poor. Very few public hospitals in the country do kidney transplants and less than five do liver and heart transplants. Should they get involved much more? The answer is, no. In a country where public spend on health care remains an abysmal 1.2% of GDP — less than a third of what even some developing countries spend — priority should be on spending the limited allocation on areas that would benefit the greatest number of persons. Which is why a World Health Organisation Consultative Group in its 2014 report points to a study in Thailand which finds that money spent on dialysis can save 300 times more healthy life years if spent on tuberculosis control. It considers expansion of low- and medium-priority services before near-universal coverage of high priority services as an “unacceptable trade-off” and does not include dialysis or organ transplantation even in the low-priority category. A given amount, if spent on organ failure prevention will save many more lives than if spent on organ transplant.

Faultlines and solutions

Are there any solutions to these issues of trust gap and inequality? Only steps to moderate are possible in these deep-rooted societal fault lines. One usual approach is to regulate hospitals through acts and rules. In the 25th year of the Transplantation of Human Organs Act, 1994 , it is time to revisit its effectiveness. Substitution of bureaucratic procedures for hospital and transplant approval by self-declaration and mandatory sample verification involving civil society will improve compliance — as proved in other countries — and will also help get more hospitals involved. Further amendment is needed to ensure full State autonomy in this area, avoiding the Central government’s interference in organ distribution, which is now demotivating many hospitals. Apart from this, all State organ distribution agencies need to make their operations fully transparent. Steps such as making online organ distribution norms and the full details on every organ donation will help build public confidence in the system.

As for “organs from poor to rich” some moderation of the inequality in our country is called for, especially as India figures in the top 10% of unequal countries in the world and among the top 10% of high proportion population spending more than a tenth of their income on health. This must also be considered in light of the fact that the organ comes totally free to a hospital from a donor. One approach could be to mandate that every third or fourth transplant done in a private hospital should be done free of cost to a public hospital patient. This will amount to cross-subsidisation, with the hospital, the doctor and the recipient footing the bill for free surgery to the section of the population that donates a majority of organs. This may not please present stakeholders in this field but they need to avoid the tendency to sweep inconvenient issues under the carpet and discuss seriously how to address the trust gap and inequality that are factors impacting family consent for organ donation.

Dr. J. Amalorpavanathan is former Member Secretary, Transplant Authority Government Of Tamil Nadu (TRANSTAN) and C.E. Karunakaran is Trustee, National Network for Organ Sharing (NNOS) Foundation, Chennai

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Printable version | Dec 6, 2019 3:46:40 AM | https://www.thehindu.com/opinion/lead/getting-organ-donation-to-tick-again/article30118791.ece

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