By Sheikh Mustafa
SRINAGAR: In the heart of the quiescent village of Lachipora, 60 kms away from north Kashmir’s District Baramulla along the Line of Control (LoC), a young boy named Rafiq Ahmad Hajam clings on to hope as he fights a devastating battle with Chronic Kidney Disease (CKD).
CKD is a condition that causes the kidneys to lose their ability to filter waste and fluid from the blood. This can lead to serious complications such as high blood pressure, anemia, bone disease, and heart failure.
Rafiq’s life has been a whirlwind of medical procedures, hospital visits, and an unwavering desire to overcome his illness. Rafiq’s journey began in his 12th grade year, when he started experiencing unusual symptoms – fatigue, loss of appetite, and an inexplicable swelling in his ankles. Initially dismissed as minor ailments, these symptoms persisted, prompting concerned family members to seek medical attention.
In 2022, when he had just turned 25, he was diagnosed with kidney failure and recommended to undergo a kidney transplant. The news struck like a bolt of lightning, shattering Rafiq’s already disrupted life. His world, once filled with youthful exuberance and dreams of the future, was suddenly shrouded in uncertainty.
Rafiq’s family cannot afford the treatment for his condition, which involves regular dialysis or a kidney transplant. Dialysis is a process that artificially removes waste and fluid from the blood using a machine.
Rafiq requires dialysis one to three times in a week. The cost of dialysis per session ranges from 15,000 to 30,000 rupees per session. A health card under the Ayushman Bharat Scheme makes the treatment almost free. Yet, he has to spend Rs 3000 to 4000 thousand per week for other medical formalities. His financial burden is met from few donations from different sources. “My two brothers work as labourers, struggling to make ends meet and are unable to contribute adequately to his treatment costs.” To cover the costs for his treatment, he has also applied under various government schemes and sought help from NGOs, but he has not received any help so far.
The cost factor is not the only challenge. Renowned urologist and Head of Department of Urology and Kidney Transplant Unit at SKIMS, Dr Salim Wani says, “Dialysis can provide temporary support for kidney failure patients, allowing them to wait for a transplant. However, alternate therapies are not always effective and may not be a permanent solution. A kidney transplant is a more effective solution.” A kidney transplant is a surgery that replaces a damaged kidney with a healthy one from a donor.
That is why Rafiq and his family are exploring every available avenue for a transplant. But finding a donor is extremely challenging. The first glimmer of hope emerged when Rafiq’s elder brother, driven by unwavering love, stepped forward as a potential kidney donor. Rafiq’s brother was suffering from diabetes, rendering him ineligible for donation. As the family grappled with this setback, another brother underwent testing, only to discover a mismatch in tissue samples. The weight of these rejections pressed heavily on Rafiq’s spirits, but his family remained steadfast in their unwavering support.
A month ago, tragedy struck the family once again when Rafiq’s father died of cancer. His brother, Zahid Ahmed, is distraught but feels helpless. “Now my brother is dying, and I can’t do anything to save him. He was a bright and talented boy and wanted to study.” However, his mother, a beacon of resilience, held him close, her unwavering belief in her son’s strength fueling his determination to fight on. But her only hope is a kidney donor and she is trying her best to find “someone with a good heart who can help my son”. It’s not an easy search.
Dr Wani explains why: “Organ donation laws specify that only listed family members can donate organs to living recipients. This is done to prevent the organ selling mafia from exploiting vulnerable individuals. However, there are a few exceptions to this rule: Deceased donation. Organs can be donated by a deceased person with the consent of their legal heir, means family. This allows more organs to be available for transplantation, saving lives.”
Donation of near relatives also count. According to the Jammu and Kashmir Transplantation of Human Organs Act, 1997, a near relative of the recipient can also donate an organ. The Act defines a near relative as: Spouse, Son, Daughter, Father, Mother, Sibling, Grandparent, Grandchild, Uncle, Aunt, Niece, Nephew. Therefore, while the law generally restricts organ donation to listed family members, the definition of “family member” includes some individuals who may not be immediate relatives. Additionally, deceased donation provides another avenue for organ donation and helps save lives.”
Despite the challenge of finding a donor, Rafiq’s spirit remains unbroken. He continues to undergo dialysis, a grueling process that drains his energy, but his hope is pinned on a miracle – a life-altering kidney transplant. He is one among the many hoping for the same.
High Prevalence rate of Kidney failures
CKD is a highly prevalent disease in India and some of its main causes are diabetes, hypertension, glomerulonephritis, chronic interstitial nephritis, drug abuse, and excessive consumption of pain killers.
According to National Kidney Foundation, “10% of the population worldwide is affected by Chronic Kidney Disease (CKD), and millions die each year because they do not have access to affordable treatment. According the 2010 Global Burden of Disease study, Chronic Kidney Disease was ranked 27th in the list of causes of total number of deaths worldwide in 1990, but rose to 18th in 2010. This degree of movement up the list was second only to that for HIV and AIDs.” However, it is estimated that “number of cases of kidney failure will increase disproportionately in developing countries, such as China and India, where the number of elderly people are increasing.”
The picture is much grimmer. The World Health Organisation reports say that India has a severe shortage of dialysis centers and kidney donors, making it difficult for many patients to access the life-saving treatment they need. The cost of kidney transplant may range from 5 to 15 lakh rupees or more.
Dr. Salim Wani, echoes this concern. He says that the critical reality in India is that while approximately 1.8 lakh people suffer from kidney damage annually in India, only 5,000 to 6,000 receive kidney transplants. The scenario, he says, is no different in Kashmir.
The limited donor pool remains a significant challenge. The limiting factor is that we don’t have enough donors,” Dr. Wani stated. He explains that organ donation falls under the Human Transplantation Act of 1994, which restricts organ donation to relatives or close relatives. Similar limitations exist for liver transplantation, with 30,000 to 40,000 people requiring liver transplants but only 50 to 60 successfully transplanted annually. The situation is equally challenging for heart transplants, with only 15 successful transplants out of 50,000 patients. Apart from shortage of organ donors, there are several other challenges like mismatching of blood, tissue, and other samples.
Low Organ Donation in Kashmir
“Organ donation statistics in Kashmir are exceptionally low compared to other states in India or developed countries. This is attributed to various factors, including religious and cultural beliefs, lack of awareness about organ donation, and misconceptions surrounding the process. The number of organ donations in Kashmir is far from sufficient to meet the growing demand for transplants,” Dr Wani says.
He explains, “organ donation falls under the Human Transplantation Act of 1994, which restricts organ donation to relatives or close relatives.” The other option is the potential of cadaveric (deceased) transplantation, where organs are retrieved from brain-dead donors for transplantation. A single deceased donor can save eight lives by donating two lungs, two kidneys, a heart, and corneas. In addition, advancements in medical technology have made arm and leg transplants possible.
“Organ donation is permitted by the government and even from a religious perspective,” Dr. Wani asserts. He adds that individuals can pledge for organ donation, a simple process that involves registering with the National Organ & Tissue Transplant Organisation (NOTTO) and obtaining a donor card with a unique government registration number. He says there needs to be awareness regarding organ donation, particularly regarding brain stem death. Brain stem death is a medical condition that signifies the irreversible loss of all brain functions. A person diagnosed with brain stem death is legally considered deceased.
“Brain stem death is the most common condition for potential organ donors, and it is crucial for individuals to be aware of this condition and its implications,” Dr Wani says, adding that there is a need for awareness to bridge the demand and supply gap and save lives.
Kidney failure is a life-threatening condition that affects millions of people worldwide. In Kashmir, the demand for kidney transplantation far exceeds the available resources. The shortage of kidney transplants in Kashmir stems from a complex interplay of factors, including limited access to dialysis facilities, inadequate awareness about organ donation, and a lack of specialized healthcare infrastructure.
Dr Wani says, “One reason is that there is a lack of awareness about the benefits of organ donation. Another reason is that there is a strong cultural taboo against organ donation and additionally the religious sentiments attached with the patients.”
As a result, patients often endure long and agonizing periods of waiting, with some succumbing to their condition before receiving a transplant. Dr. Wani said that “Hundreds of patients in Kashmir require transplants each year, but only a handful of transplants are performed due to the lack of available organs. This disparity leads to long waiting times for patients and their families, who often face immense emotional and financial strain.”
Transplant Facilities in Kashmir
Only two hospitals in Kashmir are presently offering transplant services – SKIMS and Super Specialty Hospital GMC, Srinagar. SKIMS performs one or two kidney transplants every week, and to date, has successfully conducted 550 kidney transplantations in the last several years.
Since Kashmir has only two major transplant centers, many patients opt for traveling outside Kashmir for treatment.
Organ transplantation facilities in Kashmir are generally considered to be good, but there are some areas where they could be improved. Dr Wani says, “the state has limited transplant units. These units are able to perform live-related kidney transplantations, but they are not yet able to perform cadaveric transplantations due to a lack of organ donors. Despite these challenges, there have been some significant improvements in organ transplantation in Kashmir in recent years. The number of transplantations has been successfully performed and the survival rates have improved. However, there is still a long way to go to meet the needs of transplant patients in Kashmir.”
The Government of Jammu and Kashmir has taken some steps to promote organ donation, such as creating the State Organ and Tissue Transplant Organization (SOTTO). SOTTO is responsible for raising awareness about organ donation, registering donors, and matching donors with recipients. The government has also provided financial incentives to hospitals that perform organ transplants. Despite these efforts, organ donation rates in Kashmir remain low. This is a serious problem, as there are many people in the state who need organ transplants.” To improve the situation, the government, religious leaders and print and electronic media need to continue to raise awareness about organ donation and make it easier for people to register as donors.
Patient Wait Times and Experiences
The wait for a transplant can be agonizing for patients and their families. Some patients wait for years, while others may never receive the organ they need. According to the National Kidney Foundation “Once you are added to the national organ transplant waiting list, you may receive an organ fairly quickly or you may wait many years. In general, the average time frame for waiting can be 3-5 years at most centres, but it is longer in some parts of the country.”
This prolonged wait can lead to psychological distress, financial hardship, and even death. The experience of waiting for a transplant can be emotionally draining, filled with uncertainty and anxiety. Patients often feel helpless and despair as their health deteriorates while they wait for a life-saving organ. “The wait time for an organ transplant can vary depending on the type of organ needed. Patients who are waiting for an organ transplant often experience a range of emotions, including hope, fear, and anxiety. Some of the challenges that patients face while waiting for a transplant include the uncertainty of the wait, the physical and emotional toll of waiting, and the financial burden of waiting,” Dr Wani says.
Awareness Initiatives
In Kashmir, the health department and doctors are undertaking awareness drives about organ donation, the various organizations, and influential individuals like religious leaders, teachers, and media outlets have fundamental role to dispel misconceptions and encourage organ donation, thereby bridging the gap between the demand for organs and the availability of willing donors. Specific initiatives include public awareness campaigns, community outreach programs, religious engagement, school engagement, partnerships with healthcare institutions, leveraging technology, and recognizing organ donation heroes.
Dr Wani recently spearheaded a half marathon awareness program at the breathtaking Zabarwan Mountains on the importance of organ donation. But he feels more efforts are required. “We need organ donation coordinators, organize donor pledge drives, promote living organ donation, establish a comprehensive organ donation registry, and enhance organ transplant infrastructure.”
Success stories
Dr Wani, however, reminds that there are also some success stories. He mentions the case of a young girl, whose name he did not disclose. The girl’s mother selflessly donated a kidney, giving her a second chance at life. “I had the privilege of performing the transplant surgery in October 2018, and today, I’m happy to share that the young woman is healthy. She has become a passionate advocate for organ donation, spreading awareness about its life-saving potential and inspiring others to consider this act of kindness.”
Such stories strengthen the resilience of Rafiq and many other patients like him, whose human spirit soars even in their darkest moments.
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