I underwent a heart transplant surgery in 2018. It gave me a second life, but what followed was a struggle few outside the transplant community understand. India celebrates every organ donation as a national achievement, yet transplant recipients are often left to survive on their own, with minimal financial support for medicines and diagnostics, and almost no insurance coverage for lifelong care.
This neglect affects not only recipients but also donors’ families. Their faith in the system rests on knowing the organs they gave so selflessly will continue to save lives.
Unfinished story of donation
Organ donation is an extraordinary act of generosity. Families who consent to donate after the death of a loved one believe that their loss will create life for another. But when recipients cannot afford post-surgery care and the transplanted organ fails, donors may feel their sacrifice was in vain.
Thirty-year-old Manoj Das was transplanted but never came out of unconsciousness as high creatinine levels claimed his life. His surgery was delayed, collecting money for the operation, the heart failure having affected his kidneys meantime. This is a crime both against the one who could have lived and the one who had donated the organ.
In July 2025, I was invited by the Zonal Transplant Coordination Centre (ZTCC) Pune to address families of cadaver donors. I was asked about my health after the transplant. I explained that I was healthy, and I followed all medical protocols with care. Yet I was struck by their hesitation — an undercurrent of doubt about whether organ transplants truly succeed in the long run. Preserving their faith requires not only good surgery but also systems that ensure recipients remain healthy.
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The burden of staying alive
Survival after transplant depends entirely on strict adherence to immunosuppressant drugs, which prevent rejection. These cost between Rs 12,000 and Rs 35,000 per month. On top of this are regular blood tests, scans, and hospital visits. Insurance rarely covers outpatient care, leaving patients to pay out of pocket. Missing even a few doses can trigger rejection. Some recipients, unable to afford the costs, stretch or skip medication and tragically die — despite having been given the gift of life.
Even under optimal care, post-operative vigilance is non-negotiable. Yet patients are left to navigate this challenge alone.
The government has focused largely on awareness. The National Organ and Tissue Transplant Organisation (NOTTO) has invested crores in campaigns to encourage donation, but support to those who survive on donated organs has been lacking. Ayushman Bharat–PMJAY provides unclear hospitalisation support. It also excludes lifelong medicines and diagnostics.
Insurance companies generally refuse to cover transplant recipients, branding them as “high risk.” Insurance Regulatory and Development Authority of India’s (IRDAI) guidelines remain vague, leaving the most vulnerable unprotected. Hospitals procure medicines cheaply but bill patients at high rates. Diagnostic labs charge widely differing fees. In practice, “healthcare for all” excludes transplant patients and donors.
Why donors matter here
If transplant recipients cannot sustain the organs they receive, public trust in donation will erode. Why should families part with the organs of loved ones if society does not ensure they are cared for afterwards? Each failure risks discouraging future donations. This must not happen.
Organ donation is not charity. It is a moral pact between citizens, doctors, and the government. Donors do their part. It is now up to policy and health systems to honour their gift.
The reforms required are targeted and achievable.
- Relief for medicines: Exempt immunosuppressants from GST and provide them through empanelled medical pharmacies.
- Insurance reform: IRDAI should explicitly include transplant care under modern treatments. Insurers must be required to issue policies to recipients.
- Fair pricing: Hospitals should sell medicines at procurement cost plus nominal charges. Diagnostic test costs should be standardised and discounted for transplant patients/recipients.
- Reserve funds: Maharashtra’s transplant fund is a start, but national and state-level funds should support all recipients, with subsidies based on income levels.
Meanwhile, the Supreme Court has affirmed that the right to health is part of the right to life. Citizens donate organs for the collective good. The state must ensure those organs continue to save lives.
Every transplant patient deserves the security of knowing survival does not depend on personal wealth. Saving lives without sustaining them is not healthcare—it is half-care.
Organ donation does not end with surgery. It lives on in the recipient, cared for tenderly and with all kinds of sacrifices. To honour donors’ sacrifice, India must sustain its live donors and its recipients, and help keep their second lives alive.
Viney Kirpal is a heart transplant recipient (2018), academic and health writer. She has edited and authored New Life. New Beginnings: Compelling Stories by Organ Recipients, Donors, and Doctors. She tweets at @KirpalViney. Views are personal.
(Edited by Saptak Datta)