An acquaintance of ours has been wait-listed for a donor heart and both lungs for the last five months. He does not feel well enough to return to his office and recently resigned from his job. Had he been transplanted with donor organs, he could have resumed work and contributed actively to the development of the country. He is 25 and a computer engineer.
He is not alone. There are over 300,000 chronically ill patients who are wait-listed for donor organs, and 20 people die daily waiting for a donor organ.
This is not an insignificant number.
India’s organ donation policy has long been criticised for its inefficiency and lack of impact. Despite numerous pledges and campaigns, the actual number of organ transplants remains dismally low. A comparison of the interim and latest budget figures reveals no significant increase in allocation for organ donation, raising questions about the government’s commitment to this crucial issue. The implications of this budgetary stance are very real.
The state of things
India’s deceased organ donation rate has been less than one donor per million population for a decade, according to Vivek Kute, secretary of the Indian Society of Organ Transplants. The need is for 65 organs per one million. Fifteen lakh deaths occur annually in road accidents, yet the government has not been able to harness the required number of cadaver donors. While its focus is on pledges from the public, it has done little to convert these pledges to reality. Eighty-five percent of donors are living donors who donate their kidney or part of their liver for a relative. The number of cadaver donations is negligible at 1.2%.
In an investigative article in Scroll, Dr. Vatsala Trivedi, retired professor and head of the urology department in Mumbai’s Lokmanya Tilak Municipal General Hospital, highlighted that while efforts were made to train medical students and nurses in organ transplants, there was little interest due to a sense of novelty and lack of regularisation of laws. Doctors in government hospitals are overburdened with managing critical patients, leading to the wastage of cadaver donor organs.
Once a brain-dead person suffers a heart attack, most of their organs cannot be used. A little-known limitation is that only healthy organs of brain-dead patients can be transplanted. Therefore, there is an age limit of 50 for the donor heart and lungs, 60-65 for the pancreas and intestines, and 100 for the corneas and skin. Living donors can donate up to 60-65 years of age, provided they are in good health and not on medication.
National Organ and Tissue Transplant Organization (NOTTO)
The NOTTO has done a commendable job of setting up a national registry with several checks and balances to ensure that chronically ill patients are transplanted with healthy organs. One of the authors is a heart transplant recipient who received a donor organ on the third attempt after the first two organs were rejected.
A person who refused to sign a petition to the Union health minister which we have drafted – ‘Save Lives, Support Transplants: Financial Aid for Organ Recipients and Donors’ – said, “If people are so sick and they don’t have the money, they should die.”
There is an erroneous belief in our country that those who need a transplant are only the elderly. Nothing could be further from the truth. Transplantation is often the sole hope for patients suffering from chronic diseases where medication and treatment have stopped working. Some babies are born with chronic diseases, and some young people develop chronic diseases and need transplants to give them a new lease on life.
The Financial Burden of Transplants
A signee to the petition for financial aid for organ donors and recipients wrote that her child has a serious single-ventricle heart defect. This means an expensive transplant.
Given the huge cost of a transplant, ranging from Rs 12 lakh for a kidney in a government hospital to Rs 25 lakh in a private hospital, and from Rs 25 lakh to Rs 2 crore for a heart and one or both lungs, the transplantation programme is unsustainable without government aid. The majority of patients and their families are forced to sell their houses, borrow money, or even crowdfund for a transplant, which is a planned surgery, sometimes even while their patient is being treated.
The waiting period for a donor organ runs into years in government hospitals. Well-to-do and poor people from different locations rush to a few quality private hospitals because they are well-organised, have the protocols in place, and have the best doctors to manage their patients.
Caretakers have to pay astronomical fees they cannot afford, just to save their loved ones. Time is short, and the patient has to be transplanted within a certain period.
Also read: Why India Faces a Shortage of Cadaver Organ Donations
Some state government schemes for organ transplant financial aid seem to be available in Tamil Nadu, Assam, and Delhi, for economically poor patients but the patient has to raise the remaining funds as the amounts are small. Exceptions are some states like Andhra Pradesh and Tamil Nadu which provide Rs 25 lakhs and INR 22 lakhs per patient. The Union government scheme is for CGHS patients. The states, perhaps because health is a state subject, restrict the grant allocation to state residents who undergo the transplant in the state. This condition is problematic as the state may not have the donor organs available or infection-free hospitals to treat the deteriorating patient. Overall, there is lack of uniformity in the kind of aid offered.
Government claims versus reality
Despite claims, only 3.8% of the total budget has been apportioned to healthcare in India ever since the pandemic, but a mere 2% is utilised from the existing budget. There are no dedicated funds for transplant recipients, despite the government’s claim to save lives through organ transplants. There is a lack of implementation and commitment in practice.
There is an absence of uniform action and implementation of even the financial commitments made in the NOTTO Transplant Manual (2022). Even two years after the manual was presented at the G20 Summit, it has not begun providing free immunosuppressants to transplant recipients, nor has it announced paying for the funeral cost promised to the donor’s family. The Interim Budget of 2024 allocates some funds for pharmaceutical developments and adding medical colleges to existing hospitals, but not for setting up quality transplant centres.
Besides the petition, as a collection of transplant recipients and organ donors, we had also sent a letter signed by about 75 of us. In response, Dr. Anil Kumar, the Director General Medical, NOTTO told us that he has referred our letter to the health minister and asked us to wait for the end of this month for announcements to be made.
The Way Forward
The government must revise its health budget and prioritize setting up new low-cost, quality transplant centres across the country to ensure accessible and efficient organ transplantation services. These centres would help alleviate the burden on existing facilities and provide more opportunities for patients to receive timely transplants. Additionally, it is crucial to incentivise doctors working on cadaver donations to increase their participation and commitment to the process.
Financial rewards, recognition programs, and career advancement opportunities would help ensure that medical professionals are motivated to contribute to the organ donation system.
Providing adequate staff to declare brain death is another essential step. Proper training and skilled personnel are necessary to promptly and accurately identify potential donors, which would significantly increase the number of available organs. Training doctors and coordinators to motivate families to donate the organs of their loved ones can lead to more families consenting to donate.
Honouring organ donors and their families nationally on India’s Organ Donation Day, August 3rd, and paying the funeral cost to donors is a gesture that can encourage more people to consider organ donation upon death. Recognizing and celebrating the selflessness of donors and their families can help change societal attitudes towards organ donation.
Providing lifelong medicines free of cost for all transplant recipients is crucial for the long-term success of transplants. This financial support would reduce the burden on recipients and ensure they have access to necessary medications to prevent organ rejection.
Financial assistance for transplant diagnostic procedures to correct early rejection in recipients is a critical area that requires attention. Accurate and timely diagnosis can help detect and address potential issues early, improving the overall success rate of transplants.
Enforcing the IRDAI regulations (2024) for insurances to provide medical policies for post-transplant recipients and living donors would enable them to have adequate financial protection and support for their healthcare needs.
The government must develop a detailed roadmap with realistic timelines for implementing these measures and ensure transparency in tracking funds spent. Action and implementation must replace verbal promises and empty commitments. The public should support petitions advocating for effective organ donation policies. Proper implementation of these policies in India could save countless lives.
Viney Kirpal is a former Professor of English at IIT Bombay and a health writer. She lives in Pune and can be contacted at ceogiit@gmail.com.
Siddhant Rathi is an electrical engineer from IIT Indore. He lives in Indore and can be contacted at srathi61@gmail.com.