Life in Limbo
Kidney disease is silently claiming lives across India as the country faces severe obstacles from acute organ shortages and inadequate donor systems to low public awareness. Despite significant advancements in transplant medicine, the illegal kidney trade, poor implementation of organ donation laws, and reluctance toward organ donation underscore an urgent need for educational, social and ethical interventions to end patients’ agonisingly long wait for kidney transplant…
By Abhigyan/Abhinav
In India, kidney failure is a significant public health issue, affecting approximately 180,000 people each year. Sadly, only around 6,000 kidney transplants are conducted annually, leaving thousands of patients on long waiting lists with little hope of receiving the treatment they desperately need. This discrepancy highlights a severe shortage of kidney donors, creating immense suffering for those waiting for the chance of a transplant to save their lives.
Recently, however, a groundbreaking study by the National Institutes of Health (NIH) offers hope. This study revealed that kidney transplants between HIV-positive donors and recipients are as safe and effective as those from non-HIV donors. This development, already successfully applied in the United States, could significantly increase the number of kidneys available for transplantation in India. Dr Suriraju V, a Senior Consultant Urologist at Regal Hospital, believes that this advancement could be life-changing in India, where the demand for kidneys far exceeds the supply. By allowing HIV-positive donors to donate kidneys to HIV-positive recipients, the donor pool could expand, potentially saving many lives.
Each year, hundreds of people die while waiting for a transplant due to the scarcity of organs. As the population ages and cases of organ failure rise, the number of people needing kidney or liver transplants will likely increase further. Kidney transplants are usually performed on patients with end-stage renal disease, either from a living or deceased donor. Although kidney transplants are not considered emergency surgeries—since dialysis can sustain patients temporarily—many still die waiting for a transplant. Dialysis serves as a temporary solution by filtering toxins from the blood, yet it is not a permanent fix, and living on dialysis can be challenging. However, the success rate for kidney transplants is high, with the potential to vastly improve the quality of life for recipients.
India has an average of 3,000 to 3,500 kidney transplants yearly, even though around 150,000 people need a transplant. The rigorous and complex process of organ transplants requires highly trained medical professionals and extensive care. Interestingly, India ranks second globally in the number of kidney transplants performed annually, behind only the US. However, when adjusted for population, India ranks 40th out of 69 countries in terms of transplants per million people, with only about three transplants per million people for those suffering from kidney failure.
The cost of a kidney transplant in India is roughly `3-4 lakh (USD 4,000-5,500), and post-operative care can cost at least `10,000 (USD 140) per month for the rest of the patient’s life. Tracking the rate of kidney transplants and living kidney donors is crucial, especially as end-stage renal disease continues to rise globally. Comparing transplant rates worldwide helps India understand its own performance and challenges. Currently, India has a high disease burden related to kidney failure, and the country faces significant obstacles in implementing organ donation laws, as well as combating issues like illegal organ trading.
The Transplantation of Human Organs Act of 1994 permits organ donation from brain-dead patients, but most donations in India come from living donors, often family members. If India could increase kidney donations to just two per million people, it could retrieve 4,400 kidneys per year, alleviating the pressure on living donors. Unfortunately, India lacks a national registry for tracking kidney transplants, but estimates by the Multi Organ Harvesting Aid Network Foundation suggest there are around 3,000 to 3,500 transplants annually, with only 5 per cent from brain-dead donors. The annual demand, however, is around 150,000. Compared to other countries, India’s rate of living kidney donors has remained stagnant due to limited health insurance and financial support for patients.
For the past decade, kidney donation has been stigmatised in India, and the law prohibits the commercial sale of organs. Due to high demand, enforcement of this law is challenging, and cases of illegal organ trading continue to emerge. Reports on organ trafficking underscore the severe shortage of donors in the country. Globally, around 600,000 people need kidney transplants each year, but only 60,000 receive one. In India, of the 150,000-200,000 patients needing transplants, only 3,500 obtain them. As lifespans increase and cases of kidney disease continue to rise, this shortage will only grow.
Dr S P Yadav, a Senior Urologist with Pushpanjali Hospital, Gurugram advocates for a unified national policy to promote organ donations and enforce strict regulations. Kidney transplants differ from other medical treatments, and Dr Yadav suggests the central government should regulate this area specifically. He also recommends a centralised authority to oversee the transplant process, inspect hospitals, and hold the medical and administrative staff accountable. Currently, the authority under the 1994 Act has limited jurisdiction across India. A centralised system could ensure that all transplants are reported, and that each donor and recipient, along with the medical team involved, is documented. This authority would also manage a waitlist for patients needing transplants, making the process more transparent and accessible.
Dr Ravi Bansal, Senior Consultant Nephrologist at PSRI Hospital in Delhi, emphasises that internationally, organ donation policies are well-established and widely supported, with cadaveric transplants accounting for more than 80 percent of transplants. Dr Bansal points to the Netherlands as an exemplary model, where organ donation is incorporated into the school curriculum. In the Netherlands, students are given the option to pledge their commitment to organ donation before they transition from school to higher education, effectively instilling awareness and acceptance of organ donation early in life. This commitment is reinforced through the Central Organ Sharing Program, which is highly structured and efficient, ensuring that organs are allocated and shared responsibly across medical facilities. In contrast, India, though equipped with adequate laws, faces a significant gap in awareness about organ donation. Dr Bansal underscores the urgent need to raise awareness among both medical professionals and the general public to fully utilise the laws and regulations governing organ donation and transplantation.
Dr Rajesh Aggarwal, Nephrologist at Sri Balaji Action Cancer Hospital, highlights the critical shortage of kidneys for transplant in India, noting that this shortage significantly hampers the ability to optimise transplant outcomes. He acknowledges that advancements in immunosuppressive therapies and clinical care have positively impacted short- and long-term transplant outcomes, with overall one-year graft survival rates reaching approximately 95 percent. Despite these advancements, the waiting list for kidney transplants continues to grow, creating bottlenecks in the system. Additionally, fraudulent practices and illegal organ markets continue to be a troubling issue, further complicating the landscape of kidney transplantation. Dr Agarwal’s insights reflect the systemic challenges facing kidney transplant programs in India, from the growing demand for transplants to the ethical and regulatory challenges posed by illegal organ trade.
Dr S P Yadav adds another perspective on the challenges of kidney transplantation, emphasising the difficulty in finding willing donors. He suggests that the primary goal of transplant facilities should be to serve those in need, especially the economically disadvantaged, while building medical expertise and increasing system capacity to handle the rising demand. The number of patients awaiting kidney transplants has been steadily increasing. In response to this, several proposals have been discussed to enhance the overall benefits of kidney transplants by incorporating measures of transplant outcome while ensuring equitable access for all candidates.
The Kidney Donor Profile Index (KDPI) is a critical tool in kidney allocation, designed to match donor kidneys with recipients in a way that maximises survival outcomes for both parties. KDPI is based on a clinical formula that categorises donor kidneys according to their predicted longevity post-transplant. Through this index, kidney allocation is directed towards individuals who are most likely to benefit in terms of long-term health and survival. Certain populations also receive enhanced access to transplants by calculating their waiting time from the start of dialysis. This approach aims to tackle two main issues: the allocation of ideal donor kidneys to recipients with lower life expectancy and the distribution of less-than-ideal kidneys to those likely to have a longer post-transplant life span.
Causes of Kidney Disease
In India, kidney disease has emerged as a major public health challenge, with studies indicating that approximately two individuals succumb to kidney-related diseases every five minutes, equating to about 200,000 deaths per year. This alarming statistic underscores the urgent need to establish more screening and detection clinics across the country and implement preventive measures to reduce mortality due to kidney failure.
Kidney disease is often termed a “silent killer” because it can progress without noticeable symptoms until it reaches a critical stage. Early signs include changes in the quantity and frequency of urination, which may either increase or decrease, particularly during night-time hours. The colour of urine may also become darker, and individuals may feel an urge to urinate without being able to pass urine upon reaching the restroom. These symptoms, although subtle, can be indicative of underlying kidney disease and warrant immediate medical attention.
The most common causes of kidney disease include diabetes, high blood pressure, and arteriosclerosis (hardening of the arteries), which can damage the kidneys’ blood vessels. Kidney diseases may also arise from inflammatory conditions such as nephritis, which can result from infections or autoimmune responses where the body’s immune system mistakenly attacks the kidneys. Other forms of kidney disease, like polycystic kidney disease, are congenital and arise from structural abnormalities, while some metabolic kidney disorders, inherited from both parents, interfere with the kidneys’ functional processes. These disorders are relatively rare but contribute to the overall burden of kidney disease.
Anatomically, the kidneys are two bean-shaped organs located on either side of the spine, beneath the ribcage. Their primary role is to filter waste products from the bloodstream and convert these into urine. When the kidneys lose their functional capacity, waste accumulates in the body, leading to a life-threatening condition known as kidney failure. In such cases, kidney transplantation is often considered the most viable long-term treatment option.
The Necessity of Kidney Transplantation
For individuals suffering from end-stage renal failure, kidney transplantation offers a chance for improved quality of life and survival. Besides dialysis, a transplant is the only option that can restore kidney function. A kidney for transplantation must come from a compatible and healthy donor. Following transplantation, recipients must remain on immunosuppressant medication and undergo regular medical supervision for the rest of their lives to prevent organ rejection.
Age is generally not a barrier to kidney transplantation, as long as the recipient’s overall health allows them to withstand major surgery. Recipients must be willing to comply with lifelong immunosuppressive therapy to prevent their immune systems from rejecting the transplanted kidney. Dr Rajesh Aggarwal explains the importance of the creatinine clearance test in assessing kidney function. This test involves collecting urine over a 24-hour period and comparing creatinine levels in the urine and blood. A creatinine clearance rate below 10-12 cc/minute typically indicates the need for dialysis.
Dr Suriraju V adds that creatinine, a by-product of muscle metabolism, is filtered out of the blood by the kidneys and excreted in urine. Abnormal creatinine levels may indicate impaired kidney function, which, if severe, may necessitate a transplant.
The transplant procedure generally takes about five hours. During surgery, the new kidney is positioned in the lower abdomen, with blood vessels connected to those in the recipient’s body, allowing blood flow to resume through the transplanted kidney. The ureter of the new kidney is also connected to the bladder, enabling urine production. Typically, a living donor kidney begins functioning within 3-5 days, whereas a cadaveric donor kidney may take 7-15 days. Hospitalisation lasts 4-7 days post-surgery, with additional medications (diuretics) administered if urine production is delayed.
Immunosuppressive drugs are crucial in preventing rejection, although they require lifelong adherence and monitoring. Regular blood tests are necessary to ensure proper dosing and to detect any signs of rejection or toxicity. Certain foods, like grapefruit, can interfere with the metabolism of immunosuppressive drugs, diminishing their effectiveness. Therefore, patients are advised to avoid grapefruit and similar citrus fruits post-transplant.
While acute rejection occurs in 10-25 percent of patients within the first 60 days, it does not always result in organ loss and may be managed with additional medications. However, transplant recipients may experience complications, including infections due to immunosuppressive therapy, imbalances in electrolytes (which can impact bone health), and side effects such as excessive hair growth, obesity, acne, diabetes, and high cholesterol.
Dr Rajesh Aggarwal notes that while a transplanted kidney typically functions for 10-15 years, patients may require another transplant if the kidney fails, necessitating a return to dialysis in the interim. Strict regulations prohibit financial transactions for organ donations, mandating that donors come from within the recipient’s family or close social circle.
Ethical Considerations in Kidney Transplantation
The ethical dimension of kidney transplantation extends beyond medical procedures, affecting how society views life, death, and health. Modern medicine has transformed death into a moment shaped by ethical decisions, especially in the case of life-saving transplants for older adults. With longevity now considered an attainable goal, even individuals over 70 are evaluated for transplants, challenging societal norms.
Dr S P Yadav explains that the material aspects of the human body are deeply intertwined with ethical considerations. When donors come from the succeeding generation, ethical responsibilities extend beyond the individual, encompassing social obligations and moral perspectives on family and healthcare. This ethical landscape reflects the impact of routine transplant procedures, where each individual holds the potential to be a donor or recipient, continually shaping the moral fabric of society.
Overall, through enhanced legislation, increased public awareness, and improved medical infrastructure, India can make significant strides in closing the gap between organ demand and supply, ultimately saving more lives..