As India’s burden of non-communicable diseases soars, the country is facing a widening gap between the growing burden of organ failure and the limited financial protection available to patients requiring transplants
Fifty-two-year-old Ganesan (name changed) had been working in the United States when he underwent his first kidney transplant surgery in 2007. Ten years later, he had returned to his home state of Kerala, when it became evident that his transplant had failed. He went on dialysis again for five years, before registering under Mrithasanjeevani, the State government’s deceased donor organ donation programme. Mr. Ganesan was lucky enough to receive a kidney from a deceased donor in 2023, and believed his years of struggle were finally at an end. That, however, was not the case.
“My ordeal actually began after the surgery when I sought reimbursement for the surgery costs under my private insurance plan. My application was rejected several times despite multiple queries. I had to pursue my case relentlessly for months and go right up to the top management before the insurer finally agreed to pay the bills,” he says.
Mr. Ganesan managed to get his bills paid, but most organ transplant patients do not have the time or resources to be able to pursue their claim for months, or the financial wherewithal to bear the expenses that come with a transplant and its after-costs. As he himself puts it, most people would have given up on the process.
As India’s burden of non-communicable diseases soars, the country is facing a widening gap between the growing burden of organ failure and the limited financial protection available to patients requiring transplants, with insurance coverage remaining fragmented and inadequate, particularly for post-transplant care.
While some State governments have introduced schemes for high-cost procedures for patients who fall under a certain income threshold, coverage for patients outside of these income ceilings and for working populations is inconsistent. Schemes such as the Employees’ State Insurance and the Central Government Health Scheme offer some support, but provisions vary widely across States. In the private sector, transplant costs are significantly higher, and insurance often excludes essential components of care.
Recipients and organ donors, therefore, face staggering costs, delays and denials of claims if they are covered under insurance, as well as denial of coverage following a transplant or an organ donation.
Before the surgery
Approximately 5,00,000 people in India need a transplant every year, but only a fraction of this number receives one. For recipients, expenses do not begin with a transplant surgery: most patients have been in and out of hospitals for years, on long-term medication and on procedures such as dialysis, all of which eat into finances. While the transplant surgery itself may be covered under private or government insurance, pre-transplant expenses are often not. A study, ‘Cost–benefit Analysis of Introducing Organ Transplant in the Ayushman Bharat Pradhan Mantri Jan Arogya Yojana’ published in the Indian Journal of Transplantation last year, noted “significant financial strain on patients”, pointing to the direct and indirect costs of hospital visits and consultations prior to the procedure as one of many costs faced.
For donors, the situation is even more dire. Most donations in India are from living donors: as per the National Organ & Tissue Transplant Organisation’s annual report for 2023, of the over 16,000 donors that year, over 15,000 were living donors. Donor surgeries and health costs however, are often out of the ambit of insurance completely. “Screening expenses for the donor, as well as pre- and post-hospitalisation expenses for the organ donor are not covered by [private] insurance companies,” points out Noble Gracious, executive director of the Kerala State Organ & Tissue Transplant Organisation.
For families, where for instance, a wife is donating her kidney to her husband, this means that only a small portion of the many major expenses may be covered, if insurance is available, leaving the rest to be borne out-of-pocket.
After the surgery
“Organ transplants are among the most expensive of procedures,” notes Paul Ramesh, senior consultant, heart and lung transplant surgeon, Kauvery Hospitals, Chennai. Even for uncomplicated cases, the costs are high. “If patients develop complications, not all insurance providers cover these costs, and patients have to pay out of their pockets. Unfortunately, transplants are done for very sick patients and can become very expensive if patients develop complications,” he says.
Costs do not end at the hospital, however. Post-transplant care requires lifelong immunosuppression and regular follow-ups. Monthly medication costs can range from ₹10,000 to ₹15,000 or more, particularly in the initial months when the risk of rejection is highest.
For 63-year-old Naveen (name changed), a resident of Bengaluru, money worries are now an everyday reality. Following a kidney transplant in 2016, he struggles to meet the expenses of long-term follow-up care. “I spend nearly Rs. 15,000 every month for immunosuppression drugs. This is apart from regular investigations for follow-up care. My insurance plan does not cover any of this,” he says.
“Most policies do not cover outpatient visits, long-term follow-up, or monitoring, all of which are critical after transplantation,” says Sonal Asthana, lead consultant – hepato-pancreato-biliary and liver transplant surgery at Aster CMI Hospital, Bengaluru, adding that reimbursement caps and claim rejections further limit access.
For patients, if funds run out, adherence to medication protocols can become a challenge. Non adherence to immunosuppressant medication in the post transplant period resulting in the failure of the graft is all too common, doctors say. This is especially challenging in paediatric transplants, where the costs have to be borne for many years.
“In the initial days post transplant, patients often receive support from various quarters for meeting their medicine and other expenses. But over time, because of financial constraints, medications and tests sometimes get disrupted. There have been several instances where the patient goes back to a critical state following graft rejection,” points out Dr. Gracious.
Donors are even less financially protected in private insurance plans – placing them in a precarious position for any complication that arises from their surgery or any care required after their procedure. Rasleen Kaur, director at Policy Bazaar Health says that provisions for donor expenses cover for inpatient medical expenses incurred by the donor during the harvesting of the organ are available. “However, specifications of cover vary by insurer. Some plans specifically cover donor complications requiring ICU admission or redo surgery for up to 180 days post-discharge. Certain policies include the donor’s pre-hospitalisation (60 days) and post-hospitalisation (90 days) medical expenses. Other policies explicitly exclude donor screening, transportation of the organ, or any donor medical expenses incurred after the harvesting is complete.”
Prasun Mitra, a cardiologist at Woodlands Hospital, Kolkata, points to another issue. “Many patients develop heart complications post organ transplant/donation, but then are not able to claim insurance for these ailments,” he says, adding that issues such as these bred frustration and mistrust of the healthcare system amongst patients.
Even when comprehensive insurance exists, there may be problems. “One major issue is newer advances in treatments. A person may have purchased a particular insurance with a particular coverage. When he/she needs treatment, if newer advances or newer biologics/drugs are available, they may not be able to access it as policies may come with a caveat to cover only existing standard of care and these may also be expensive. So, there is no one size fits all policy,” says Dr. Ramesh. Aspects such as accessing a remote organ, transporting it on a chartered flight, and complications that arise out of transplants, arising from elderly age or comorbidities cannot be fully taken into account, he adds.
Post-procedure insurance
The issues do not end there. Availing a fresh insurance policy after having undergone a transplant or having donated an organ is next to impossible.
Post transplant, the insurance coverage for recipients is often restricted, with exclusion clauses galore and is covered only on a case by case basis, say experts. Recipients are classified as ‘high-risk individuals’ because of their existing morbidities and even when they are offered insurance, the premium charged is high, said an insurance firm representative in Kerala.
People who have donated organs too find it tough to find health insurance, because their health profile also becomes “risky” post-donation. “There is limited understanding among insurers about the long-term health outcomes of living donors,” Dr Asthana notes.
Last year, says Viney Kirpal, a heart recipient, who has spent lakhs over the course of seven years, having to sell her home to fund post transplant care, 42 transplant recipients, donors, and transplant doctors submitted a representation to the Insurance Regulation Development Authority of India (IRDAI), asking for clarification on a long-standing question: Are living organ donors and post-transplant recipients eligible for full, inclusive health-insurance coverage?
IRDAI responded noting that inclusion and protection for all categories of individuals, including organ donors and recipients under health insurance coverage was mandated.
“But when we shared the IRDAI clarification with insurance companies, they refused to comply,” she says. A complaint that she had filed with the Ombudsman in Pune nearly a year ago is yet to be attended to, she says.
Government schemes
Several States including Tamil Nadu, Karnataka and Kerala that offer health insurance for families under a certain threshold of income now cover transplant surgeries. The Central government’s flagship Ayushman Bharat PM-JAY provides limited, package-based coverage for some transplants, but coverage is more complete for kidney transplants than for many other organ transplants, which may require additional financial support. Tamil Nadu and Karnataka offer lifelong, free provision of immunosuppressive drugs to transplant patients, while Kerala offers it for the first year. While this has been a major boon to hundreds of patients who have undergone transplant surgeries and remain on medication, there are some gaps that need to be addressed say experts.
For one, a section of patients fall into the ‘missing middle’: their income does not allow them to qualify for State insurance schemes and they do not have the finances for private insurance.
For another, a large chunk of transplants takes place in private hospitals, and even if they are empanelled under State health insurance schemes, costs may overrun the insurance ceilings. Post-transplant care can take a hit when it comes to the private sector, notes Arpita Roy Chowdhury, a senior nephrology and renal specialist based in Kolkata. “In government hospitals the treatment is free, and so patients show up for follow-ups, but over 75% of organ transplants in India happen in the private sector. Follow-ups are a major issue there, and without close monitoring of patients, their health could get compromised,” she says.
Another gap is when it comes to covering donors for complications or health issues arising post the donation – there is limited coverage of this, and with difficulties accessing private insurance, patients are often left to bear costs themselves.
What is needed
Insurance models are patchy and unevenly distributed across the country as far as government models go and with private models, leave patients to the mercy of insurance companies for reimbursement. Stories of being made to run pillar to post, obtain an endless number of documents and be subject to multiple checks, abound on social media. Data from IRDAI reveals that in FY25 health insurance claims rose 21.18%, but the total amount settled by insurers increased by only 12.88% IRDAI also highlighted concerns about the amounts settled being lower than expected.
Vivek Kute, professor and unit head, nephrology, Institute of Kidney Diseases and Research Center and Dr. H L Trivedi Institute of Transplantation Sciences, Ahmedabad and member of apex technical committee, NOTTO, notes that organ donation and its care continues to remain a major challenge in terms of cost and patient management.
The government’s own body has recognised the burden of finances: at a recent national review meeting on organ transplantation activities, jointly organised by National Organ and Tissue Transplant Organisation and the Union Health Ministry, it was pointed out that the high cost of immunosuppressant drugs was a significant concern and that patients often do not get financial support for drugs beyond the first year. It was strongly recommended that the lifelong cost of immunosuppressants for post-transplant recipients be comprehensively included under AB PM-JAY.
As Ms. Kirpal puts it: the stakes are high. “For transplant recipients, survival depends on lifelong essential diagnostics and medication—costs not affordable to most Indians and not covered by current policies. I believe India urgently needs a unified, state-supported model to ensure post-transplant care, similar to the frameworks used abroad.”
Beyond insurance though, the core issue remains one of affordable, accessible healthcare for all. If organs are failing at a mass scale in India, care prior to a transplant, during a transplant and after a transplant – for both donors and recipients – need to be recognised and prioritised.
(With inputs from C. Maya in Kerala, Afshan Yasmeen in Karnataka, Serena Josephine M. and Athira Elssa Johnson in Tamil Nadu, Bindu Shajan Perappadan in Delhi and Shrabana Chatterjee in West Bengal, compiled by Zubeda Hamid.)
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