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Health System Building Blocks and Organ Transplantation in India

Divyaveer, Smita MD, DM1; Nagral, Sanjay MS2; Prasad, K.T. MD, DM3; Sharma, Ashish MS4; Jha, Vivekanand MD, DM5,6,7

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doi: 10.1097/TP.0000000000003685
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DISEASE BURDEN

The absence of registries in India makes it challenging to provide a precise estimate of those developing end-stage organ failure and thus benefitting from transplantation. A population-based study estimated an annual age-adjusted incidence of 232 patients with kidney failure per million population.1 A 2016 nation wide survey projected the number of patients on dialysis at about 175 000 and the number of kidney transplants at 6857.2 The Indian Ministry of Health assessed that about 180 000 kidney transplants are needed each year. The number of patients in need for extrarenal transplants is also not known—approximately 40 000–50 000 are estimated to need liver transplants annually; the number of patients requiring heart and lung transplants is expected at 50 000 for each organ.3Table 1 shows the estimated need and the actual number of organ transplants in India.

TABLE 1. - The current state of organ transplant in India in numbers
Kidney Liver Heart Lung Pancreas
Estimated need 175 000 40 000–50 000 50 000 50 000 2500
Current number a 7936 1945 241 191 25
Number of registered centers c 240 125 <25 <10 35
Cost (US$) 2150–25 000 30 000–40 000 60 000–65 000 27 000–40 000 7500–30 000
Public sector 20% <5% <5% <5% <10%
Organ source b L>>>D L>>>D D D D
a2018 data, according to NOTTO (https://notto.gov.in/, accessed 12 December 2020).
bD, deceased; L, living.
cNot all centers are active.

As many patients in rural India do not get a diagnosis, it is likely that these numbers underestimate the real need. Moreover, it can be assumed that the need for organ transplantation will increase in parallel with a pronged life span and a rise of noncommunicable diseases.

HEALTH SYSTEMS AND INFRASTRUCTURE

Heathcare in India is provided by a mix of public and private facilities. Over 80% of curative health services in India are delivered by the private sector, consisting of a mix of small-to-medium sized hospitals and clinics in addition to large hospitals located in major cities. The publicly funded health system are organized into primary, secondary, and tertiary level centers.4 Organ transplants are available only in a few large private and public hospitals located in major cities. Although transplants in public sector hospitals are more affordable, these hospitals are fewer in number, grossly overburdened, and unable to provide services to all in need.5 As a result, transplant numbers have primarily grown in private sector hospitals.6 Although kidney transplants are performed in public sector hospitals in reasonable numbers, extrarenal transplants are performed almost exclusively in private sector institutions. In addition, there is a large geographic disparity in access to transplants, with the Eastern and Northern states in India having fewer facilities (Figure 1).

FIGURE 1.
FIGURE 1.:
Density of transplant centers (per million of the population) in different Indian states.

FUNDING AND RESOURCES

Public spending on healthcare in India is just about 1.5% of the gross national income, with most support going to national programs for infectious diseases, family planning, nutrition, and maintenance of basic health infrastructure.6

Costs for organ transplantation are highly variable across the Indian healthcare system. There is no nation-wide reimbursement policy covering costs of organ transplantation, although dialysis is available free of charge or at subsidized rates through the National Dialysis Program.7 Some states cover transplantation services and immunosuppressive therapy through public hospitals to patients below an income threshold.8 Approximately, 35% of the remaining patients in need have access to some form of medical insurance. However, not all insurance plans cover every aspect of treatment. For example, costs of a donor work up, induction therapy, or specialized immunologic work up may not be covered. As a consequence, patients and families often incur catastrophic healthcare expenditure, exacerbated by job losses, and the necessity to travel to distantly located transplant facilities.9 In general, the out-of-pocket payment incurred by patients is lower in public sector hospitals.

Government and private charities, philanthropy, and crowdfunding subsidize for transplants for a small number of patients, especially children. Nevertheless, a large proportion of potential recipients remain disenfranchised from the life-saving opportunity of organ transplantation.

WORKFORCE

The number of transplant professionals is abysmally low in India, with a skewed distribution.10 This shortage is particularly pronounced in the Eastern and central parts of India. There is also a shortage of trained supportive healthcare workforce, for example, transplant coordinators, counselors, and social workers.11 Nongovernment organizations including the MOHAN foundation12 are filling the workforce gap by providing capacity-building courses and programs for nonphysician health workers including transplant coordinators.

ACCESS TO MEDICINES, TECHNOLOGIES, AND DIAGNOSTICS

The broad availability of generic drugs reduces overall costs of immunosuppression; standard immunosuppressants are in general available countrywide. A number of strategies are used to reduce treatment costs such as limiting the use of induction therapy to high-risk patients, using azathioprine instead of mycophenolic acid preparations,13 and using metabolic inhibitors such as ketoconazole and diltiazem to allow for a dose reduction of calcineurin inhibitors.8 Newer agents, such as belatacept, are not yet available in India. Moreover, advanced immunological work up such as screening for donor specific antibodies is offered only to those with resources to pay for it.

Basic diagnostic facilities are available in tertiary and secondary hospitals. However, facilities providing advanced pretransplant immunological work up, molecular diagnostics, immunostaining for allograft biopsies, and extracorporeal therapies to manage sensitized patients are only available in few tertiary care hospitals and private institutes. Consequently, patients experience limitations to access essential diagnostics including measuring trough levels of immunosupressants once returning to their native places, often in rural locations. Certain laboratories provide collection services, but are expensive, and with limited availability. These problems were exacerbated during the COVID-19 pandemic.

REGISTRIES AND INFORMATION SYSTEMS

There is no national registry or waitlist for patients with organ failure. Some states including Tamil Nadu, Maharashtra, Andhra Pradesh, Kerala, and Karnataka have an organized deceased donor program with state level waitlists and organ sharing registries. Allocation criteria, however, differ from state to state and are yet not based on disease severity for extrarenal organs. The National Organ and Tissue Transplant Organization2 has been set up with a mandate to facilitate organ transplantation and to maintain registries. However, national level waitlists and reports from National Organ and Tissue Transplant Organization are yet to be published. Reporting on donor outcomes, in particular for living liver donors represents another gap.

PROGRESS AND FUTURE OUTLOOK

The advancement of organ transplantation is largely hailed as a success story for India, despite several caveats and a continuing inequity in access to this transformative therapy. The Human Organ Transplant Act of 1994 provided the legal and administrative framework to stop commercial transplants while enabling the development of ethical deceased donor transplants.14 India has one of the largest living donor kidney and liver transplant programs in the world. Because of the availability of skilled professionals and efficient private hospitals, India is considered a destination for organ transplantation by patients from countries where these services are not available.15 Some live donor liver programs in India perform approximately 15%–25% of those procedures on foreigners. Although this transplant tourism brings in revenue, it has been beset with ethical challenges.

Indian transplant centers have supported capacity building and helped the development of programs in other low-resource areas through bilateral exchange programs supported by governments or professional societies including the International Society of Nephrology and The Transplantation Society.16 Deceased donor transplantation has increased steadily over time,5 particularly in some states, supported by governments and with strong professional and programmatic leadership. The ability to perform transplantation across blood group barriers and multiorgan transplants has grown during the last 10 years. A full range of diagnostic services is available, albeit in a limited number of centers and at a cost.

Going forward, the main challenges before the transplant community are to increase access to this life-saving treatment while adhering to the highest ethical standards, improving quality of care, and developing transparent processes of decision-making, quality control, and reporting. Those goals will require political support, multisectoral collaboration, and leadership from professional societies.

CONCLUSIONS

Despite a number of limitations, organ transplantation has shown a steady growth over the last 30 years in India. Several challenges remain, in particular ensuring equitable access to all in need, improving outcomes amongst current recipients in addition to transparent reporting of transplant activities, practices, and outcomes. Those aims need to be the focus of regulatory and professional bodies and professional societies to bring transplantation in India on par with global standards.

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