In 2018, I underwent a heart transplant in a city far from home. The medical procedure was lifesaving, but since then I have experienced a costly and frustrating struggle to access vital diagnostics, ICU care and essential immunosuppressants.
Since 2024, I have had a senior citizen health card under Ayushman Bharat, India’s flagship health insurance scheme. But I have never been able to use it at any part of my transplant journey. In theory, I am covered. In practice, I am uninsured.
My experience mirrors that of other organ recipients. India’s organ transplant programme exists on paper, but on the ground it is a patchwork of vague policies and inaccessible services.
The National Organ and Tissue Transplant Organisation, India’s nodal agency for transplants, has no financial or executive authority to take any action. Meanwhile, the country’s transplant system is fragmented with inadequate government support.
The gap between policy and delivery leaves recipients stranded their most vulnerable while recovering from complicated medical procedures.
The illusion of coverage
Ayushman Bharat, which is touted as the world’s largest health insurance programme, aims to make tertiary care affordable for marginalised families. Heart and liver transplants were recommended for inclusion in the national scheme, but no formal announcement has followed.
Even when hospitals are empanelled under the scheme, they are under-resourced or unfamiliar with transplant care. Ayushman Bharat also does not guarantee that a patient can avail of critical components such as dedicated ICU facilities, diagnostics, immunosuppressants, biopsies or monitoring.
My Ayushman Bharat card has never provided reimbursement for a test or medicines. The hospitals where I am treated have not even applied to be included in the scheme.
Some doctors and policymakers say this crisis only affects the poor. But transplant care is unaffordable for the middle class too. I, like others, had to sell my flat to fund the transplant surgery and the long-term care it required.
Health insurers routinely reject transplant recipients. Despite appeals, the Insurance Regulatory and Development Authority of India has not issued supportive policies. This leaves recipients unprotected for life.
In 2024, I started a petition requesting the Ministry of Health and Family Welfare to provide financial support for post-transplant care. The National Organ and Tissue Transplant Organisation responded with recommendations but admitted that it did not have the authority to take action.
My experience, and that of others like me, points to a failing healthcare and organ transplant system.
A system designed for cities
Transplant-ready hospitals are concentrated in metros like Chennai, Hyderabad and Bangalore. But even cities like Pune do not have fully equipped, government-backed centres for hearts and liver transplants. State hospitals hold licences but often have performed few transplants.
According to the National Organ and Tissue Transplant Organisation report published in June, more than 175,000 people are on the kidney transplant waiting list while fewer than 14,000 surgeries were performed in the last year. For heart, lung and liver patients, the wait is longer, the options fewer. Government hospitals may have surgeons but no ICU beds, equipment but no trained nurses.
Patients from smaller cities have to travel hundreds of kilometres, at great cost and risk. In metro cities, too, the organ transplant system is fragmented. Mumbai, for example, does not have a public-sector organ retrieval and allocation network. Donated organs often go unused because there are no organ harvesting teams or ICU care.
Functioning organ transplant centres rely on a handful of committed surgeons. When these surgeons retire or move, transplant programmes collapse, making for a dangerously fragile system. In my book New Life, New Beginnings: Compelling Stories by Organ Recipients, Donors, and Doctors.
Dr KR Balakrishnan of MGM Healthcare notes, “Government hospitals lack the flexibility to recruit doctors. Transfers can leave a centre unmanned.” Yet, states like Maharashtra are rushing to convert underprepared public hospitals into organ retrieval centres.
India’s broken policy framework is best reflected by the fact that there has been investment in organ donation awareness campaigns but there is no enforcement body with authority over transplant delivery. At the same time, the National Organ and Tissue Transplant Organisation report calls for setting up centres of excellence, improved ICU capacity and public-private partnerships.
The cost of inaction
Without reliable systems, lives are lost. Patients travel far and borrow heavily for a shot at saving their lives. Donated organs go to waste. Promising centres falter due to staffing or funding gaps. Ayushman Bharat, meant to help, adds to the confusion.
One donor can save eight lives. But with few systems for retrieval, surgery and follow-up, that potential is lost.
India must match its transplant ambition with action:
Establishing transplant hubs in every state with retrieval, surgery, ICU and follow-up capability.
Expanding Ayushman Bharat to cover transplant from surgery to long-term care
Publishing performance data for empanelled hospitals and delisting underprepared centres.
Giving NOTTO executive and financial authority to support donors and recipients.
Creating a national registry to track outcomes, infrastructure, and equity.
Ensuring insurance access for transplant recipients across income groups.
Transplants are indeed medical procedures but also acts of faith, trust and vital public service. India has made progress in encouraging organ donation. But until that is matched by a robust, accessible and enforceable healthcare and policy infrastructure, we will continue to fail the most vulnerable patients – and the cost will be measured in lives.
Viney Kirpal is a heart transplant recipient and the author of New Life, New Beginnings: Compelling Stories by Organ Recipients, Donors, and Doctors.
World Heart Day is observed on September 29.
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