CHENNAI: Veins popped out of his weak hands, his legs were sore and medicines filled every cupboard at his home. U Bakkiyaraj, once a sales-businessman, had to end his career to battle a virus that he had contracted from a government hospital. “I’ve lost the will to fight. I sold my house to pay for the treatment, and I am now financially dependent on my sister and cannot afford even travel expenses to the hospital,” he cried.
His entrepreneurial life took a sharp turn three years ago. On a fateful week in August 2014, Bakkiyaraj and 15 others arrived at the Stanley hospital’s dialysis ward. All of them had two things in common: they had a renal complication that required kidney transplantation and could not afford surgery in a private hospital.
All 16 were on hold for transplantation, had a living related donor and hoped that the surgery would change their life for better. Little did they expect their lives to get entangled over a tragedy.
The victims of failing kidneys were all suddenly diagnosed with Hepatitis C, a viral infection of the liver, during their treatment at Stanley hospital.
All patients were screened for Hepatitis C Virus (HCV) on admission at Stanley hospital for dialysis and all, with the exception of may be one, tested negative. But the sudden simultaneous incidence of the virus in 16 people alarmed the doctors and patients alike.
Patients were immediately asked to move to other facilities by the hospital management stating that Stanley did not have the facilities to conduct dialysis for people with HCV. According to the victim’s narrative, the hospital had also warned them they may spread the disease to other patients. Startled by the sudden onset of the disease, patients in union with Aam Admi Party members, began a protest seeking clarity from the hospital.
Victims deem it a classic example of medical negligence by the hospital but Madras High Court exonerated Stanley hospital of willful negligence. However, observing that it’s impossible for 16 people in the same dialysis ward to coincidentally contract at the same time, an independent committee comprising three government doctors from MMC, was set up to investigate the case. The report issued by the committee agreed that most, if not all, patients contracted HCV while undergoing dialysis at the hospital.
The symptoms of the disease are not very visible in most patients. Jaundice, nausea, loss of appetite and intense tiredness are among the symptoms of the seemingly harmless disease. But in about 75 to 85 per cent of people who contract it, the disease escalates into chronic Hepatitis C, leading to cancer of the liver or its scarring.
People with HCV cannot undergo kidney transplantation until the viral load vanishes in the body. People with HCV are often at risk of developing other complications as their immunity goes for a toss. B Koteeshwaran (50), a victim of the infection in 2014, died on July 19 after developing multiple complications.
Despite troubling health conditions, he continued working as a driver at a private company even after contracting Hepatitis C. He was the only breadwinner of a family of five. A year after contracting HCV, he was also diagnosed with tuberculosis. Fatigue from HCV, its medication, tuberculosis and its treatment drained his work-life dry until he could get out of his house no more.
His son K Mahesh (20), who fondly recalls his father being a very active man, fell silent when narrating his father’s downfall.
“After he developed TB, his lungs were often filled with fluid, making it really hard for him to even breathe,” said Mahesh, adding that fatigue and nausea left him bed-ridden eventually. “He wanted me to become an IAS officer and died even before I could finish college,” he said, regretting that all money saved for his education went into treatment for his father. Mahesh has already started working to support his family and his career dreams have vanished.
Lenin Kumar P (31), from Krishnagiri district, had to sell his cattle to pay for his medical expenses. He was advised to take 12 Interferon injections to treat HCV which had side-effects that included fever, vomiting, body pain and intense fatigue. After administering 12 injections, the hospital found out that his viral load remained high and recommended another 24 injections. Lenin Kumar died at Stanley in June this year.
Gajalakshmi Raju (29), another victim of the Hepatitis C infection at Stanley hospital, too developed tuberculosis during treatment. Her dreams of returning to her former banking job were dashed. “Her situation worsened over the years and each subsequent complication pushed the transplantation even further,” said Raju, her husband. Gajalakshmi goes thrice a week to the hospital to undergo dialysis now. She has neither been able to resume her career nor take care of her four-year-old son.
Undergoing dialysis will be a way of life for the ones who survived until they undergo a kidney transplantation surgery. Most of them undergo 2 or 3 sessions of dialysis every week and each session takes nearly 5 hours. This will go on for years for many.
People suffering from HCV cannot undergo kidney transplantation, as the treatment increases the risk of failure. It is also risky to undergo transplantation while being treated for TB as the chances of rejection of the new organ are high. Till they are free of all infections, transplantation will be a faraway dream.
Viral load has however come down significantly among the eight survivors. While they are ready for a transplantation, they are strangled in the fear of trusting Stanley hospital again. Four among those who contracted HCV at the hospital underwent kidney transplantation and only one survived. Fearing that they too might face a similar fate, the ones who survived want to move to a private facility.
What stops them, is the second common factor that links them. None of them can afford to undergo a transplantation surgery at a private hospital. Even with concessions, the surgery may come up to `4.5 lakh per person. In a move to facilitate funding for them, Arappor Iyakkam, a citizen movement that has shown solidarity with these victims over the years, is collecting funds.
The organisation has set up a page on the crowd-funding platform Milaap. Initially, it is looking at collecting `10 lakh for two patients. “Most of them don’t have funds even to meet their everyday treatment. Funding a transplantation will be impossible,” said Jayaram Venkatesan of Arappor Iyakkam. “The victims have come this far in their battle, and we don’t want them to lose to money,” said Chandra Mohan, another member of the organisation.
Patient profile
Arul C (30)
Occupation: Daily wager (Discontinued work)
Native: Krishnagiri
Health condition: Over 300 dialysis till date. Has severe hip pain, reduced appetite.
U Bakkiyaraj (33)
Occupation: Discontinued (as sales businessman)
Native: Chennai
Health condition: Still HCV positive. Liver has been impacted to 12% due to Hepatitis C & dialysis.
R Gajalakshmi (31)
Occupation: House wife
Native: Chennai
Health condition: Over 460 dialysis till date. Suffering from severe lung infection.
R Karthikeyan (49)
Occupation: Mechanic
Native: Thanjavur
Health condition: TB patient and on high dosage of Interferon injections.
Manishankar (20)
Occupation: Student
Native: Padappai
Health condition: Suffering from excruciating pain in leg. Condition deteriorating.
V Pandian (55)
Occupation: Discontinued
Native: Chennai
Health condition: Liver damaged due to Hepatitis C. Lost vision in left eye. He is suspected to be patient zero.
P Venkatesan (42)
Occupation: Lab technician
Native: Chennai
Health condition: Over 550 dialysis till date. Health condition not improving.
S Satish Kumar (27)
Occupation: Discontinued
Native: Chennai
Health condition: HCV load is still very high. Complains of frequent chest pain, headache and sleeplessness.
S Ramesh (42)
Occupation: Discontinued
Native: Tiruvallur
Health condition: Wife donated kidney. Still undergoing treatment.
One can contribute at https://milaap.org/fundraisers/hcvpatients?utm_source=whatsapp&utm_medium=fundraisers-title or call 072000 20099