Every year in India, about five million people die due to unavailability of organs. According to a report, “only about 39,000 organ transplants were performed in 2020 against the requirement of at least 15 times.” The criteria used for a kidney transplant is emblematic of how the current organ transplant system favors the socio-economic “haves” and disadvantages the “have-nots”. Kidney transplant in India has two sources, living donor and deceased donor. Quite logically and rightly, donations from deceased donors are at the heart of government policy.
Yet, in cases where patients depend on a deceased donor, the waiting list is long. There are elaborate allocation criteria for deceased donor kidney transplantation established by the National Organization for Organ and Tissue Transplantation (NOTTO). There are multiple issues related to equity in the kidney transplant regime in India.
First, a patient must be under or equal to 65 years of age at the time of registration. Apart from being a criterion that can be considered ageist, there may be defenses to this, given that the overall life expectancy in India is 70.8 years according to the World Health Statistics 2021 report.
Yet it is difficult to estimate an individual’s longevity based on national averages. Furthermore, the life expectancy of women in India is 2.7 years higher than that of men according to the same report and hence the threshold puts elderly women at a relative disadvantage compared to men, if averages should be considered valid criteria. Additionally, with advancements in health care and nutrition in general and specific advancements in geriatric care, life expectancy in India is expected to increase to over 80 years by 2050.
The increased life expectancy each year would imply the need for a proportional increase in the threshold each year. Professor George J. Annas of Boston University in a 1985 article tells the story of Britain from 1984 when the unwritten practice became highly publicized that GPs would not refer patients from 55 or older for dialysis or transplant. This meant that there were 1,500 to 3,000 “unnecessary deaths” per year. This has led to moves to increase the National Health Service budget to expand dialysis services to meet this need, a more socially acceptable solution than allowing the now publicly acknowledged situation to continue.
In India, we replaced the unwritten rule with a written rule. But that doesn’t make it any less unfair. Culturally, we seem to believe that older people have lived their lives and therefore their lives are worth less than those of younger people. By 2050, we could have almost 20% of our population in the elderly category and these cultural assumptions may no longer be true as times change.
Second, according to the NOTTO criteria, the patient must be a case of end-stage renal disease (ESRD) on maintenance dialysis for more than three months on a regular basis. This criterion does not take into account the financial burden of dialysis on the poorest segments of the population and the lack of access to treatment. The number of hemodialysis (HD) centers in India was estimated at 12,881 in 2018 and these are also concentrated in urban areas and in private hospitals. In a country where “two thirds of the population live in rural areas where the availability of HD is limited”, the criterion of being on dialysis for three months is exclusionary and engenders inequity.
Furthermore, “almost 60% of patients on dialysis” have to travel more than 50 km to access HD, and “nearly a quarter lived more than 100 km from the facility” (Jha et. al, 2019 ). Indeed, this leads to increased costs and loss of wages, making it difficult for economically weaker patients to access dialysis. Researchers like Vivekananda Kha note that the 2016 national dialysis program, which called for the establishment of an eight-station dialysis center in all 688 districts of the country to provide HD to poor patients, would be inadequate.
“If patients were given dialysis twice a week (which is commonly done in India), only about 50,000 new patients (representing about a third of current needs) would be accommodated under this program, even without future growth. .” To be fair, the “Criteria for emergency registration” lays down the first principle of emergency registration as follows: “In the event of a kidney transplant, the emergency list essentially concerns a patient who no longer has access to dialysis and therefore cannot be maintained on dialysis”. . In practice, however, this criterion is not met due to capacity issues and lack of access even to HD stations for poor patients.
In a report entitled “Dedicated teams, costs, facilities – why pvt hospitals perform over 75% of organ transplants in India”, Abantika Ghosh observes that “Aid from the Prime Minister’s National Relief Fund is available to people in economically weaker sections, usually on the condition that the patient or family arranges some of the funds.
Moreover, “organ recipients also have to take immunosuppressive drugs for the rest of their lives, and this can cost between Rs 10.00 and Rs 15,000” and this can still be prohibitively expensive for the poor.
The national minimum wage is around 178 rupees per day, which is equivalent to 4628 rupees per month assuming 26 working days. Finally, the allocation algorithm defining the emergency registration criteria seems biased in favor of private hospitals. The person who receives the kidney depends on whether he and his deceased donor belong to a private or public hospital. The algorithm is as follows: 1. The kidney taken from a public hospital will be allocated as follows:
- First patients listed in government hospital list ONLY, then
- Patients on the combined list of public and private hospitals, then
- Private Hospital List Patient ONLY 2. Private hospital kidney will be allocated as follows:
- First the patients registered on the list of private hospitals, then
- Patients on the combined list of public and private hospitals, then
- Patient registered on the list of public hospitals
If kidneys taken from donors in private hospitals are allocated in priority to patients listed in private hospitals, this also creates an equity deficit. In a country where most hospitals are located in cities and where most deceased donors are in private hospitals, economically better-off patients who more often tend to be registered in private hospitals than in public hospitals benefit of an unfair advantage.
For example, according to a recent (May 2022) report by Sumitra Debroy, Mumbai, “a mere 2% of cadaver organ donation in the city has been facilitated by public hospitals over the past five and a half years.” Adjusting the algorithm in favor of public hospitals is perhaps the fairest and fairest alternative given the Indian context.
In addition, it is still and increasingly important to generally increase access to HD centers and other health facilities in rural areas. Another effective way to address the problem of access and equity is the wider adoption of government-sponsored health insurance schemes in southern states such as Tamil Nadu, Kerala, Pondicherry, Karnataka, Andhra Pradesh and Telangana, which ensured that “tertiary care hospitals provide maintenance haemodialysis, transplantation and follow-up at a highly subsidized rate or free of charge and therefore to the lower socio-economic strata of society. Lottery systems, ethical market-based approaches, and ethical selections of committee decisions have long been debated and offer interesting food for thought to make organ donation and transplantation more equitable.