The horrifying story of how 18 patients with kidney failure contracted Hepatitis C at a government hospital in Chennai
“Two floors down the stairs,” he said over phone. “It is in the basement. Ask for Kidney Outpatients at the entrance,” he directed.
Amidst the rows of seats occupied by numerous strangers, all eagerly waiting the doctors’ call, Arul Chinnaiyan, a man slightly built, stood with a smile. Standing with a slight stoop, Arul extended his hand.
With a face much younger than his 30 years of age, his body looked tired and weary, having grown weak from the treatment he has been undergoing, .
“I have seen the doctor,” he explained. “He has asked me to wait for an endoscopy test.” The doctor had offered to get him a free test, an arrangement of sorts specially made for Arul.
Hailing from Chandrapatti, in Vellalapatti village in Uthangarai taluk of Krishnagiri District in north-western Tamil Nadu, Arul has been a regular visitor to Chennai ever since he first came to the city in 2014.
“120 rupees, that was what I was earning a day on most days,” he said about his younger days in Krishnagiri. That was until six years ago.
Having had to drop out of school in his 6th grade, Arul had tried to help his family. He did odd jobs to earn money, to make a living, and stay afloat.
His family of three, consisting of his father Chinnaiyan aged 56, mother Selvi aged 49 and himself, were poor. His parents being daily wage labourers worked on farms mostly. They kept a few cattle too. He would join them.
Arul would also pick up whatever work came his way. “I worked as a labourer for the railways where I used to paint quarters, carry stones, basically did anything they asked me to.”
He also drove tractors for other farmers when the cropping season demanded lands to be tilled.
Off-season, he found other jobs. “I used to work as cleaner and helper in trucks,” he said. “I used to go as far as Salem and Jolarpettai.” That was the extent of Arul’s world until 2013.
It was one of those days in 2013 that he felt a sudden back pain which grew acute - pain which would just not go away.
After waiting for a few days, seething in pain, he went to a hospital in the nearby Dharmapuri district.
Unable to diagnose the cause of his unending pain, they referred him to RK Hospital in Salem. The exact cause of his pain confounded the doctors in Salem as well, who then referred him to Ganga Hospital in Coimbatore.
In Coimbatore the doctors conducted extensive scans on his body but found nothing amiss.
He was sent back with painkillers which did not ease his pain. Arul though took the pills for a few months in vain.
When the pain became unbearable again, Arul went back to the hospital in Salem. Only then was he diagnosed with renal failure.
Dialysis was the only solution, he was told - and a kidney transplant was needed too.
Kidney transplantation in a private hospital was expensive, something Arul’s family could not afford.
With no means to arrange the large sum needed for an immediate transplantation inspite of having a willing donor - his mother - Arul started on dialysis.
Arul underwent weekly dialysis in the Salem hospital for a year.
Salem, being a few hours journey by bus, his mother would accompany him while his father went to work - the only active source of income.
Dialysis cost money and the family’s finances were badly affected.
During the year of dialysis, the family learnt of the possibility of kidney transplantation in Stanley Hospital in Chennai, run by the Government of Tamil Nadu - free of cost.
A ray of hope had appeared. The family decided to travel to Chennai in June 2014.
Five years later, twice every week, Arul still travels from Krishnagiri to Chennai for dialysis. His mother, who works as a daily wager on other days accompanies him often.
Starting overnight from Krishnagiri by the 8 pm train, they reach Chennai early in the morning.
After proceeding to the hospital for dialysis they return by the afternoon train at 2:30 pm, reaching Krishnagiri at 7 in the night.
Each trip costs him around Rs 2500 including the medical expenses that he has to bear.
“Dialysis is still being done at Stanley,” Arul said, a reference to the negligence on the part of the hospital.
In June 2014, Arul had been admitted by Stanley Hospital, Chennai for ineffective functioning of kidney (renal disorder).
His family had been hoping for the transplant to be scheduled shortly soon after the necessary tests were completed. But what was once a ray of hope would soon turn out to be a nightmare.
After all the required pre-transplant tests for Arul and his mother were completed, the family would be in for a rude shock when the results came.
The results of the PCR RNA (Polymerase Chain Reaction Ribo Nucleic Acid) test would detect HCV virus and diagnose Arul with Hepatitis C.
“On 15 August 2015, the hospital had admitted a patient, Pandian, for emergency dialysis without undergoing requisite blood tests under the influence of a politician, Kamaraj,” said one of Arul’s well-wishers on condition of anonymity.
The said patient had HCV and would later pass away.
“Had they changed the tubes also, it would not have spread,” this person said.
After being admitted to Stanley Hospital, Arul had continued to undergo dialysis. And he would undergo dialysis on 15 August 2014. Arul would contract HCV.
Due to improper sterilisation and reuse of tubes and dialyzers beyond the prescribed limits, Arul was not alone.
17 more contracted HCV over the course of their dialysis. “All had undergone dialysis on the same day,” said the wife of another patient who contracted the disease.
Having come to Stanley to get a date for the transplant and return after the operations were over, Arul’s plans were going awry.
“Hepatitis C is a liver disease caused by the Hepatitis C virus (HCV). The hepatitis C virus is a bloodborne virus and the most common modes of infection are through exposure to small quantities of blood. Approximately 399 000 people die each year from hepatitis C, mostly from cirrhosis and hepatocellular carcinoma. Antiviral medicines can cure more than 95% of persons with hepatitis C infection, thereby reducing the risk of death from liver cancer and cirrhosis, but access to diagnosis and treatment is low,” says the World Health Organisation (WHO).
For Arul, the infection was on top of the already existing renal failure, a condition for which kidney transplant was the only solution. The tests he had undertaken on 14 July 2014, after being admitted to the Stanley hospital, had shown him as HCV negative.
Upon detecting the HCV spread, the hospital sent all the patients out of the hospital saying that they could not provide further treatment or dialysis as they did not have dedicated machines for HCV infected patients.
The hospital did not want to risk spread of the infection further. Nowhere in Chennai, was dialysis being given for HCV patients.
Thilakavathi had come to Stanley for the transplant of her husband Karthikeyan like Arul himself. Karthikeyan’s renal failure had been detected a month before in June 2014 in Trichy where they hailed from.
Within a month they had arrived at Stanley with a plan to stay for three months and return after transplant.
A test conducted on 18 August showed HCV in Karthikeyan’s sample as well. He was one of the 18 who contracted HCV on 15 August 2014.
Karthikeyan had been undergoing dialysis in Stanley for only one week by then. Her shock turned into anger and suspicion when the hospital authorities denied them treatment.
She pulled up old records and results and found that Karthikeyan was not alone. Her investigations found that 17 more patients had been affected with HCV because of negligence of the hospital authorities. Arul was one of them.
Thilakavathi demanded justice, but was thrown out instead. It was then that she contacted Arappor Iyakkam, an NGO in Chennai.
With the help of the NGO, she and other victims protested and forced the hospital to introduce separate dialysis machines for HCV patients.
“After that, initially two and now four separate dialysis machines have been allotted exclusively for HCV patients at Stanley,” said Arul.
The NGO also helped them take the hospital authorities to court and eventually win a total of Rs 5 lakhs as interim compensation.
Arul received Rs 3 lakhs in July 2015 and Rs 2 lakhs in December 2016. The hospital, through a later internal probe, took responsibility for 16 of the 18 HCV cases.
Out of the sixteen patients who the hospital accepted as having contracted HCV due to its negligence, nine are no more, having died due to renal complications, three of them after transplantations.
HCV is treated with Interferon, an expensive drug. However, treatment for HCV increases the risk of failure of transplantation procedures since the body is prone to reject the new organ and the overall immunity levels of the body become low.
Patients suffering from this infection therefore cannot have the transplantation procedure until completion of the treatment and are forced to suffer from kidney disorder for extended periods of time.
For Arul and many others who contracted HCV like him, Stanley Hospital offered to undertake their kidney transplant as well as the HCV treatment.
Arul’s HCV count being very high, he was given injections over six months, 26 in total, one a week.
In total, four kidney transplants on HCV affected patients were completed by Stanley hospital. The first of these transplants was undertaken on 02 April 2015, followed by three more.
Three of them died of complications. Given the very low survival rate of 25%, Arappor Iyakkam got court permission to get transplants done in private hospitals.
“Initially everyone was afraid to try transplants as three of them had died,” says Thilakavathy. And it was Thilakavathy’s husband Karthikeyan who was the first to undergo transplant at a private hospital two years ago.
Following him, three more patients, Gajalakshmi, Kumuda and Manishanker also underwent undergo successful transplants at a hospital who agreed to waive off part of the transplantation costs on the condition that they not be named. Out of the three left, two have not found donors.
“One of them had finalised his mother as the donor when he came to hospital in 2014,” said Jayaram Venkatesan, Convenor, Arappor Iyakkam. “But later she developed diabetes. So they have both applied for organ donors and are waiting. Arul’s is the fifth transplant,” he added.
“We have conducted three operations before through crowd funding,” said Jayaram Venkatesan. “One got transplantation done successfully with the help of his colleagues from the school he had taught in.”
“All the earlier treatments they had done were mostly done by means of money borrowed from friends and relatives. When they got the compensation, they paid them back. Being from poor backgrounds the cost of the transplants are unbearable for them,” he added.
HCV treatment has been another added strain. Arul has seen his HCV count reduce and then increase considerably once needing extended treatments, one reason why his transplant has been delayed so far.
As of now, Arul has been cleared fit for transplant as per tests done on 17 June 2019.
“We are hoping that people will help this time too,” added Venkatesan. “The private hospital has offered a 50% discount. The two doctors who are undertaking the transplants have waived off their fees. We appeal to the citizens to donate generously.”
“First or second of July, that is what the doctor told me,” said Arul as he awaited the endoscopy, worried about meeting the expenses. “The exact date of transplant has not been told. It will be one of those days,” he repeated.
“Can we see how much money we have collected?” Arul asks pointing with his phone which cannot access the crowd funding page.
“50,000,” he sighed when shown the amount collected till date. Rs 6 lakh is what the transplant procedure would cost.
“Can we collect enough in a week?” he asked.
(You can help Arul by donating on this link.)