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India: Gender Disparities in Organ Donation and Transplantation

Kute, Vivek B. MD, DM, FASN, FRCP (London)1; Chauhan, Sanshriti MD1; Navadiya, Vijay V. MD, DM1; Meshram, Hari Shankar MD, DM1; Patel, Himanshu V. MD, DNB1; Engineer, Divyesh MD, DM1; Banerjee, Subho MD, DM1; Desai, Sudep MD1; Shah, Nauka MD1; Rizvi, Jamal MS, MCh2; Mishra, Vineet V. MD3

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doi: 10.1097/TP.0000000000003960
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Abstract

INTRODUCTION

Gender disparity in organ transplantation is a universal challenge impacting all stages of the transplant process including listing, wait times, and outcomes.1-4 The proportion of female living, including spousal donors, is proportionally higher worldwide, with notable exceptions observed in the Philippines and Hong Kong.4,5

GENDER DISPARITY AND TRANSPLANT ACTIVITY IN INDIA

Living kidney donors are predominantly female, while many more men receive transplants. Female donors are frequently disadvantaged because of size mismatches.6 Gender disparity in access to liver transplantation is due to limitations in model for end-stage liver disease calculation in addition to donor–recipient size mismatches.7 Interestingly, deceased liver donors are more frequently male linked potentially to more frequent comorbid conditions and, paradoxically, improved access to medical care. Gender-specific size and body weight mismatches may play an additional role. Living donors, in contrast, are more frequently female.

Based on data by the Global Observatory on Donation and Transplantation, 61 821 organ transplants including 48 083 kidney transplants (41 197 living donors and 6886 deceased donors), 11 971 liver transplants (8405 living donors, 4 domino donors, and 3566 deceased donors), 1082 heart, 573 lung, 100 pancreas, and 8 small bowel transplants have been performed in India from 2013 to 2019. Eighty percent of all transplant programs in India focus on living donor kidney transplants (LDKTs).1,8,9

INSTITUTE OF KIDNEY DISEASES AND RESEARCH CENTER, AND DR HL TRIVEDI INSTITUTE OF TRANSPLANTATION SCIENCES AHMEDABAD, INDIA

It is the largest public sector transplant hospital in India with an active high-volume transplants program. The Gujarat dialysis program is an initiative by the Gujarat government and managed by our hospital. Institute of Kidney Diseases and Research Center, and Dr HL Trivedi Institute of Transplantation Sciences (IKDRC-ITS) has completed >1.2 million dialysis sessions in 50 peripheral satellite dialysis units in districts and tribal places, all over the state of Gujarat for poor patients free of cost. From 1997 to March 2020, a total of 5838 kidney transplants have been completed including 943 deceased donor kidney transplants (DDKTs) in addition to 4895 LDKTs including 440 living donor kidney paired donations.10

GENDER DISPARITY

There is a significant gender disparity in the access to renal replacement therapy in India and the state of Gujarat. A substantial gender disparity exists in the Indian chronic kidney disease registry that lists 52 273 patients,11 the Gujarat dialysis program with 2500 patients,11 the deceased donor waiting list including 400 patients in addition to 6300 kidney transplants performed at IKDRC-ITS, Ahmedabad; for all those, the gender imbalance (female/male) has been 1:2.3, 1:3, 1:4 and 1:5, respectively.

GENDER DISPARITY IN TRANSPLANTATION

Living kidney donors have predominantly been female and many more men have received renal transplants over the past 2 decades at IKDRC-ITS, the largest public sector transplant hospital in India. More importantly, observed disparities have not declined but, in contrast, have gotten more pronounced (Figure 1). A majority of male recipients have received DDKT (Figure 2A). Interestingly, there have, however, also been more male deceased donors (Figure 2B). Of 831 DDKT recipients between 1997 and 2018 in our center,10 68% have been males and 32% females. Gender disparity is not only specific for IKDRC-ITS but rather a nationwide phenomenon also observed for paired kidney donations in India.12 From 2000 to 2020, we performed 440 kidney paired kidney exchanges (9.6% LDKT); at our center, 79% of donors have been female and the overwhelming majority of recipients (80%) have been male. Similar trends were observed in the 35 ABO-incompatible kidney transplants performed in our centers. Notably, gender disparities in transplantation are also reported by other Indian studies.4,13-17

F1
FIGURE 1.:
A, Gender disparity in recipients for living donor kidney transplants at IKDRC-ITS: 1999–2020 (n = 4787). B, Donor disparity in donors for living donor kidney transplants at IKDRC-ITS Ahmedabad, India: 1999–2020 (n = 4787). IKDRC-ITS, F, female; Institute of Kidney Diseases and Research Center and Dr HL Trivedi Institute of Transplantation Sciences; M, male.
F2
FIGURE 2.:
A, Gender disparity in recipients for adult deceased donor kidney transplants, IKDRC-ITS, Ahmedabad, India. B, Gender disparity in donors for adult deceased donor kidney transplants, IKDRC-ITS, Ahmedabad, India. IKDRC-ITS, Institute of Kidney Diseases and Research Center and Dr HL Trivedi Institute of Transplantation Sciences.

GENDER DISPARITIES IN LIVING DONATION

Overall, female donors constituted 71% of the living donor pool.4 Female donors are most frequently mothers (33.7%), wives (20.1%), and infrequently daughters (0.4%) (Table 1 and Figure 1B). When parents donate, it is most frequently the mother (73%). Grandparents (0.5%) are infrequently kidney donors, mainly because of age and age-related comorbidities. However, if grandparents donate, grandmothers are in the vast majority (78%). If siblings donate, the ratio between sisters and brothers is almost equal (51% versus 49%). Most of the sisters donating are married. Consent of the husband is mandatory in those cases; if the sister is not married, consent of the parents is required. In our experience, it is also less likely that a single sister will come forward as a donor due to sociocultural beliefs and practices. If children donate, daughters are less likely to come forward (39%). Overall, daughters (0.4%) are given the last priority as organ donors among near-related donors in India. Interestingly, donation rates of Fathers have increased from 10% in 1999 to 15% in 2020, reflecting a trend that focuses on the well-being of the nuclear family. For married couples, 90% of donors come from wives based on sociocultural reasons and a financial dependency on the husband. In our experience, the wives are less frequently stepping forward to donate if there is financial independence.

TABLE 1. - Donor–recipient relationship in 4787 living donor kidney transplants: IKDRC-ITS Ahmedabad, India
Donor relationship n = 4787 %
Mother 1612 33.7
Wife 966 20.1
Grandmother 20 0.4
Sister 295 6.2
Daughter 20 0.4
Extended family (female) 138 2.9
Kidney exchange (female) 348 7.3
Father 617 12.9
Husband 110 2.3
Grandfather 6 0.1
Brother 285 5.9
Son 30 0.6
Extended family (male) 240 5.1
Kidney exchange (male) 100 2.1
IKDRC-ITS, Institute of Kidney Diseases and Research Center and Dr HL Trivedi Institute of Transplantation Sciences.

DONOR–RECIPIENT RELATIONSHIP

The decision to donate among women is highly influenced by their roles within the family and society. Figure 1B indicates that females (mother and wife) contribute to 50% of living donors. The contribution of Mothers increased from 20% in 1999 to 30% in 2020. Donations by other than near-related donors (near-related donors include parents, spouse, siblings, children, and grandparents) declined from 25% in 1999 to 3% in 2020. Transplantation of Human Organs Act has permitted kidney exchanges, also called swap transplants since 2011. From 2000 to 2020, 9.3% of all living donors have been through paired kidney exchanges. The female proportion as donors (78%) in kidney exchanges was disproportionately higher compared to male.

PEDIATRIC TRANSPLANTATION

Gender disparities become even more pronounced in pediatric kidney transplantation (Figure 3). Gujarat’s school health program was implemented in 2006, providing free healthcare to all children irrespective of the economic status of the parents. Unfortunately, financial shortcomings are much more in the way than ABO and or HLA incompatibility, preventing access to organ transplantation in India. Despite the provision of free kidney transplants for children with the support of Gujarat’s school health program, there continues to be hesitation even by parents to donate to their daughters. As a consequence, the Gujarat State Organ and Tissue Transplant Organisation have started to prioritize DDKT allocation for girls who therefore receive organ transplants mainly from their mother or deceased kidney donors and rarely from their father.

F3
FIGURE 3.:
Pediatric transplantation (LDKT + DDKT) at IKDRC-ITS, Ahmedabad: 1999–2020 (n = 439). DDKT, deceased donor kidney transplant; IKDRC-ITS, Institute of Kidney Diseases and Research Center and Dr HL Trivedi Institute of Transplantation Sciences; LDKT, living donor kidney transplant.

BARRIERS AND SOLUTIONS

Many factors have been proposed to explain the observed discrepancies between male and female donors in India. Sociocultural factors (patriarchy, poverty), in addition to the pronounced economic and social dependency of women on men within the family, are the key contributors to the apparent excess of female living donors. With men being frequently the only “bread-winner” in the household, the loss of income during evaluation, surgery, and recovery, particularly for low-income households, “prevents” men from donating and the wife is consequently “pushed” to be a donor. Indeed, family pressure on females mounts. It is thus not at all uncommon to see undue coercion and pressure for women to donate.

To overcome this situation, awareness of gender disparities appears as a critical first step. Transplant centers and communities should thus implement processes to address gender disparities and support for further research on underlying causes and mechanisms need to be initiated. Additional steps may include to develop policies ensuring equitable access to transplantation and to disseminate available information on inequities and ways to combat them.

Nevertheless, the solution to gender imbalance is not just education and removal of poverty, but a deeper reassessment of traditional gender roles and a woman’s place in her family. Policies that have the potential to ensure that girls and women have equitable access to transplantation, irrespective of their societal role and financial status in the family, may set an important example. An effective way to address the gender disparity in transplantation in India and the developing world in general may be through the implementation of an equitable deceased donor allocation system, prioritizing difficult to match female recipients in a team effort with local living donor champions ensuring logistics and social support. Although the implementation of those policies is relevant, the hard work addressing social biases and financial disadvantages will need to happen in parallel.

ACKNOWLEDGMENTS

The authors wish to thank Stefan G. Tullius, MD, PhD, for encouragement, helpful comments, and support in editing this article.

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