KARACHI: It’s around Iftar time. The city has lost its hustle and bustle and the busy Saddar roads wear a deserted look. However, the boundaries of the Sindh Institute of Urology and Transplantation (SIUT) remain lined with people, most of them seeking free treatment for their loved ones, while others looking for free food from charities operating in the area. Poverty is writ large on their faces.
Among them is 17-year-old Savera. She is one of the victims of last October’s HIV and hepatitis outbreak reported at the dialysis unit of the Chandka Medical College Hospital (CMCH), a major tertiary care government-run facility in Larkana district.
The outbreak affected more than 50 patients.
A renal failure patient, the teenager accompanied by her parents, has travelled all the way from her village in Khairpur Nathan Shah, Dadu, to the transplant facility in Karachi, hoping for a better treatment.
Sitting on a pavement outside the SIUT, Savera recalls how she reacted when doctors informed her that she had contracted HIV and hepatitis C.
“I cried a lot. The news broke me inside, shattering my hopes for a normal life; a life I often dreamt of experiencing once I had a kidney transplant,” she says.
The victims received no compensation though an official inquiry held the hospital responsible for the outbreak
The family, too, went into shock. “This news came as a bombshell. The worry how she would cope with a new illness didn’t let me sleep for weeks,” says her mother, Mukhtiar, a lady health visitor in her town.
According to her, Savera suffered renal failure three years ago when she contracted typhoid. The bacterial infection, the family alleges, was mishandled by doctors who prescribed her a high dose of some medicines causing irreparable damage to her kidneys. The family came to know about it when they arrived in Karachi and Savera was examined by doctors at private hospitals and later at the SIUT.
Savera left her regular schooling two years ago and now studies privately as a grade nine student. She travels twice a week from her village to Larkana for dialysis.
“The dialysis ward is too warm. I wish the government installs a cooling system like the one at the SIUT. This small step would be a major convenience for patients like me,” she replies when asked if she wants something from the government.
Like the 56 renal failure patients affected by the HIV/hepatitis outbreak at the CMCH, the family hasn’t received a single penny as compensation from the government, though an official inquiry held the hospital responsible.
“The government should realise that the weekly travel expenditure is a huge burden on poor families living far away from the hospital. My husband, a labourer and hepatitis C patient, earns a few hundred rupees daily,” says Mukhtiar, complaining that she receives her salary after a gap of three to four months.
Savera’s parents were concerned that while her daughter was declared HIV and hepatitis C positive seven months ago, doctors at the CMCH haven’t prescribed any medicines for the same.
Kidney transplant refused
Twenty eight-year-old Abdul Waheed is among the patients whose kidney transplants were refused following a positive diagnosis of HIV at the CMCH.
Speaking on the phone, his brother Ali Haider, resident of Goth Maula Bakhsh in Larkana, said: “I was heartbroken when the doctors told me they can’t carry out the transplant procedure because my brother is HIV positive. I had planned to donate my kidney to him,” says Haider, a hotel worker and father of two.
According to him, he had even borrowed Rs50,000 from his brother-in-law for the anticipated expenses during his travel to and stay in Karachi for the transplant surgery. “He gave me the amount only after I offered my two-year-old daughter to his five-year-old son in marriage, once they both are adults.
“I had to marry off my daughter any way so I thought I should make this offer to get money for my brother’s transplant. Also, I can’t afford to borrow money on interest like many people do when in need,” he replies when questioned over his action.
Prolonged illness has pushed the family into abject poverty. Sharing his financial woes, Haider said: “My brother’s continued illness has made me a beggar; I have to borrow money every time he needs dialysis or blood transfusion. Earlier, I used to donate blood to him but now doctors have stopped me from doing so as it can harm my health.”
He expressed dissatisfaction over the treatment his brother had been receiving at the CMCH and said that doctors didn’t carry out any examination to determine the patient’s health status prior to or after dialysis. His brother wasn’t prescribed any medicines for HIV.
Twenty-five-year old Nawab Khatoon, a housewife and resident of Syed Ghulam Qadir Shah Goth in Larkana, and 40-year-old Damsaz Ali, a school teacher in Larkana, were also among the dialysis patients affected by the HIV outbreak.
Their families urged the government to ensure proper treatment to their loved ones. The patients also deserve government compensation for the severe harm caused to their health at a public sector health facility, they said.
(All patients, who shared their accounts, insisted that their names be mentioned in this report.)
Seven patients dead
The number of patients affected by the outbreak are unclear, with The Journal of Pakistan Medical Association (Dec 2016) putting the number at 56.
Officials at the CMCH, however, say that 50 patients were affected; at least 36 patients were diagnosed with both HIV and hepatitis C, and two with hepatitis B.
At least 21 patients were under the age of 35 while there were four teenagers. Seven patients have died so far. Of them, six died while receiving HIV treatment.
The inquiry committee set up by the government to investigate the incident held the hospital responsible for it.
“The CMCH operated dialysis machines without standard operating procedures (SOPs). There were no established SOPs followed for periodic screening of hemodialysis patients, for HBc, HBV or HIV,” the inquiry report said.
The report also saw unsafe blood transfusion at blood banks in the district and lack of infection control practices at the hospital as likely causes which led to the disease outbreak.
The Sindh Aids Control Programme manager was not available for comment.
Admitting that no government compensation had been given to patients affected by the HIV/hepatitis outbreak, Dr Hola Ram, incharge of the HIV/AIDS treatment centre at CMCH said: “We are trying to provide the best care in our limited resources. Under the present protocol, HIV treatment is not being provided to patients whose cluster of differentiation [CD4] count is over 500. As for hepatitis coverage, we had referred Savera’s case to the government hospital in their district. Now, it’s the patient’s responsibility to contact the concerned doctor.”
At the SIUT, Dr Sunil Dodani explains that 28 patients affected by the HIV outbreak in Larkana came to the SIUT last year. Of them, 14 were under the age of 35 while three in their 20s.
“Unsafe blood transfusion and lack of infection control practices have been seen as major reasons for the outbreak in Larkana, which has a high number of injecting drug users with HIV,” he said.
According to him, the new WHO guidelines, which have been adopted by Pakistan, say that treatment should be initiated as soon as HIV diagnosis is made, regardless of the patient’s CD4 count (the strategy minimises risk of disease transmission to almost zero).
Out of the 2,200 patients screened for HIV at the SIUT after the Larkana incident, he says, only two were found to have the infection. Earlier, HIV screening was dependent on patient history but now all patients at SIUT are tested for it.
The institution plans to have a kidney transplant of an HIV patient in the coming weeks, he adds.
Published in Dawn, June 18th, 2017
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