SRINAGAR, INDIAN-ADMINISTERED KASHMIR – Sajad Ahmad, 15, is deep in thought as dialysis machines click and whir around him.
The teenager is one of 25 patients awaiting a kidney transplant at Sher-i-Kashmir Institute of Medical Sciences, a government-run hospital in Srinagar, the summer capital of Jammu and Kashmir.
Sajad, a resident of Kunzer, a town 30 kilometers (18.5 miles) from Srinagar, says he developed a kidney problem five years ago. He took medication to treat the problem for several years, says Bilal Ahmad, his 19-year-old brother.
But four months ago, both of Ahmad’s kidneys failed. He was admitted to SKIMS, where he is still awaiting a transplant.
Like the other patients at the hospital, Sajad is not waiting for a donor, which is a requirement to gain admission here. His mother, Raja Begum, will donate one of her kidneys.
Rather, he is waiting for the hospital staff to schedule his surgery. The SKIMS staff has the capacity to perform only one kidney transplant per week.
“Transplantation can be done anytime, but he has to wait for his turn as there is a long queue of patients in waiting,” says Mohammad Aslam, a senior technologist at SKIMS, while preparing another patient for dialysis.
In the meantime, Sajad receives dialysis two to three times per week for four hours each time.
Throughout the Kashmir Valley, the incidence of kidney disease is increasing, but even patients with transplant donors must wait months at hospitals for surgery because of limited staff capacity. Infections also bump patients down the queue. New regulations governing organ donors limit treatment options for people with kidney disease as well. As medical costs mount, local nongovernmental organizations, government funds and individuals provide financial assistance. Meanwhile, health experts are advocating for education around preventative care to curb kidney disease.
Detected incidence of kidney disease has nearly doubled in Jammu and Kashmir state. Eight percent of the population suffers from chronic renal failure, while more than 25 percent have significant risk factors, according to a 2012 SKIMS report. The incidence was 4.4 percent in 2010, according to an earlier SKIMS report.
The study recommends that SKIMS expand dialysis and transplant facilities to deal with the emerging “high prevalence of chronic kidney disease and its risk factors.” Hypertension, diabetes and inflammatory disease are the three main causes of kidney failure.
The study notes that more than 25 percent of Kashmiris suffer from hypertension, and more than 20 percent suffer from prehypertension. Hypertension, or high blood pressure, can damage blood cells and kidney functions, making it a predictor of long-term kidney disease.
India is known as the diabetes capital of world, as it contains highest number of diabetics per capita, according to the 2012 SKIMS report. The combination of diabetes and hypertension are most prevalent in Kashmir.
Dr. Khurshid Ahmad Banday, a professor of nephrology at SKIMS, also attributes the rise in kidney disease to diabetes and hypertension. But he says that people are also seeking health screenings more frequently, which could have contributed to the rise as well.
Banday says patients typically receive transplants between 15 and 60 days after arrival here. But for Sajad, the wait has lasted five months.
Delays can happen for several reasons. Banday and his team have the capacity to perform just one transplant per week, though he says he hopes to add a second weekly transplant surgery soon. SKIMS is one of two government-run hospitals that perform kidney transplantation in the state.
Although the hospital’s schedule is often to blame, unforeseen illnesses and circumstances in patients also account for the delays.
Abdul Gani, who lies adjacent to Sajad in the ward, has been at SKIMS since he was diagnosed with kidney disease in October 2012. Like Sajad, Gani has a donor ready. His father, Mohammad Sultan Bhat, plans to donate his kidney.
“If I will not donate my kidney, who else will do it?” asks Bhat, who accompanied his son to SKIMS from their home district of Kupwara in northern Kashmir.
But Gani says that after eight months, he still does not know where he sits in the queue of patients awaiting transplants.
“Gani’s transplantation got delayed by three months due to his chest infection,” Aslam says. “Otherwise, his kidney transplantation would have taken place.”
Hospital staff also had to make sure that Sajad was in good health to receive his transplant.
“As soon as Ahmad’s investigations would be complete, we’ll take up his case for transplantation,” Banday says. “Being young, we’ll take him in the third week of June 2013. Before him, there is a patient from Jammu. Ahmad is on standby, and in case the patient from Jammu faces some problem, we’ll take Ahmad.”
But Sajad is still waiting for his transplant.
Sajad got an infection, which delayed his surgery, Banday says. He is now on the schedule to obtain his transplant in August.
New regulations around approved organ donors also create delays in treatment here.
For patients who do not yet have a donor lined up, dialysis is not available at SKIMS.
SKIMS only provides dialysis for patients on the list for transplant or in emergency situations, Banday says. There are six other dialysis centers in the area and an additional 200 patients who have opted for home dialysis, which can cost more than 20,000 rupees ($340) per month.
“Those who opt for transplantation have to first arrange a donor,” Aslam says.
But patients can only obtain transplants from family members.
“Only related donors are permitted,” Aslam says. “Unrelated donors are banned.”
Finding and vetting a relative to serve as a donor can be challenging, though, because of new regulations governing the process.
The Transplantation of Humans Organs (Amendment) Bill of 2011 mandates that no financial transactions be involved in arranging an organ transplant. When a patient finds a donor, both parties must visit the hospital’s authorization committee for approval. They must also receive an affidavit from the Court of Judicial Magistrate of First Class and a certificate from the deputy commissioner of the district stating that the patient and donor are compatible.
“Once the committee gives a go-ahead signal, then the transplantation can take place,” Banday says.
The authorization committee, which has approved Sajad’s and Gani’s donors, comprises six members of senior hospital staff. In recent months, it has rejected three of patients’ applications for donor approval.
“They weren’t genuine,” says Banday, who is not on the committee but is familiar with its decisions. “The committee wasn’t satisfied that they were relatives. Occasionally, we get such cases as well wherein patients pay money to donors.”
But it can be difficult to find a family member to agree to donate an organ. Banday says many family members worry about their own health and question their ability to sustain a normal life after donating.
“Even the closest family member runs away under such circumstances,” he says.
While patients wait for their turn on the operating table, medical and living costs add up. SKIMS, governmental offices, nongovernmental organizations and individuals offer assistance to defray these costs.
Patients at SKIMS receive dialysis for free.
“Our services and machines are free,” Aslam says.
Transplant surgery is also free for patients at SKIMS, Banday says.
SKIMS sets fees for medication on a sliding scale. Sajad’s monthly supply of medication ranges from 25,000 rupees ($420) to 30,000 rupees ($510) per month.
Kulsoom Bhat, public relations officer at SKIMS, says patients can also apply for assistance from local nongovernmental organizations and governmental agencies.
Financial assistance is available through the Chief Minister’s Fund for low-income families, Bhat says. In order to receive this assistance, patients must obtain a medical certificate from the relevant head of department at SKIMS by detailing the health problem and estimated cost of treatment. The director of SKIMS must sign the certificate. The chief minister can then offer assistance in full or in part, depending on patient needs and available resources.
Local nongovernmental organizations also support patients in need of financial assistance.
Sajad’s family is now receiving financial assistance from a local organization for his medication.
“An NGO was calling me few days back to confirm if he is undergoing kidney transplant,” Banday says, declining to state the specific organization for patient privacy reasons.
Help Poor Voluntary Trust is one local nongovernmental organization helping to defer staggering medical costs for patients.
“We provide medicines to patients who can’t afford it,” says Sheikh Zahoor, trustee and former general secretary of the organization. “We register patients suffering from chronic ailments and then provide them medicines on monthly basis, either in full or in part.”
But Zahoor says treating chronic kidney disease is so expensive that the organization, which runs on donations and alms, cannot cover assist patients who seek treatment in private hospitals.
“Due to limited resources, we can’t provide assistance to such patients to a large extent,” he says. “We, however, take up such cases with doctors to expedite surgeries in view of criticality of the case, as there is long queue of patients.”
There are currently more than 1,000 patients registered with the organization, Zahoor says. Most suffer from diabetes, depression and asthma.
Individuals also provide assistance to patients.
As Sajad awaits his transplant surgery, his family is living in Srinagar in a type of subsidized accommodation locally known as “sarai.”A local businessman who lives near the hospital is offering the low-cost housing to the family.
The family pays 900 rupees ($15) per month in rent, Sajad says. The average rent in the area ranges from 2,500 ($40) to 3,000 rupees ($50).
Gani’s family has incurred more than 80,000 rupees ($1,350) in medical bills, says his wife, who declined to be named for privacy reasons. A member of the local legislative assembly in Gani’s district has given the family 50,000 rupees ($850) toward the medical costs.
Meanwhile, the nephrology team at SKIMS works to increase the number of transplants and dialysis services provided, Banday says. He and his team are also embarking on an educational campaign to encourage the citizens of Kashmir to seek screenings for kidney disease.
The team has conducted at least 15 awareness programs during the last two years. It also runs informational advertisements on local radio and television.
In June 2013, the 17th Annual Conference of North Zone Chapter of Indian Society of Nephrology took place in Srinagar. Banday says he used the opportunity to advocate for increased screening for kidney disease.
“Regular screening of general population for renal disease can be one good approach to reduce the burden,” he says.
