Cast out by HIV: Families living with the spectre of a deadly virus

Cast out by HIV: How hundreds of children have been infected

Cast out by HIV How hundreds of children have been infected Cast out by HIV How hundreds of children have been infected

Ben Farmer meets families at the centre of an unprecedented outbreak. Pictures by Saiyna Bashir” data-reactid=”35″>Hundreds of children in Pakistan face a potential death sentence after being infected with HIV. Ben Farmer meets families at the centre of an unprecedented outbreak. Pictures by Saiyna Bashir

One-by-one Irshad Khatoon points out the children in her family who have tested positive.

In the cramped brick compound she shares with five related families, 22 people have been told they have HIV. Seventeen of those are children.

None had ever heard of the virus before April, or knew how it could be caught. Now they know little more except they have a potentially deadly infection, must travel miles for medicine and their neighbours shun them.

“We had never seen such a disease. We had never heard of it,” the 43-year-old widow explains. Among her immediate family, she is infected with the virus that causes AIDS, as are her daughter and two grandchildren.

With the shock diagnosis, the family of rural labourers in a village outside Ratodero, near Larkana in Sindh province, have found themselves rejected by their neighbours.

Irshad Khatoon, left, along with her daughter-in-law, Heera Khatoon, and grandchildren have all been diagnosed with HIV

“They don’t shake hands with us, they don’t talk to us, they don’t mingle with us.

“The doctors told us not to segregate the children. But still because of fear, I am keeping their utensils separate from the others.”

The story is repeated in the nearby village of Thango Bozdar. There, 21 have tested positive, all but three of them children. As parents bring the children out to sit under a tree while the heat pushes 120F, some appear healthy and lively, while others, like Mohammad Ilyas, who leans weakly against his father’s shoulder, appear emaciated and exhausted.

Only three months ago, this corner of southern Pakistan discovered it was harbouring an unprecedented HIV outbreak which has shocked the town and alarmed public health officials.

The outbreak is blamed on backstreet quack clinics and lax doctors spreading the virus among patients by reusing dirty needles. By the end of July the number of cases found was nudging 1,000 with 80 per cent of them children. The high proportion of children makes the outbreak unparalleled, health officials believe.

Dr Imran Arbani was one of the first doctors to notice something was amiss among his patients and raised the alarm

Lab technician Mansoor Ali tests for HIV testing at a screening camp at Tehsil Headquarter Hospital

In the early days of the outbreak, in late April, the town was gripped by panic as hundreds thronged a makeshift screening centre and scores tested positive each day. But as the shock subsides and number of new cases dwindles, residents and health officials are now facing up to how they cope in the long term in an area already blighted by lack of education, poverty and malnutrition.

For epidemiologists and public health workers, there is also now the concern that what was discovered in Ratodero could be the tip of a nationwide problem.

It was a Ratodero native called Dr Imran Akbar Arbani who first noticed something was amiss and went on to raise the alarm. The 40-year-old urologist also keeps a general practice in the town of 300,000 where he has been practising for 15 years. 

It was a little girl called Emaan Fatima who first alerted him to the unseen outbreak. When she arrived at his clinic in late February, she had a history of stubborn fevers that multiple doctors had been unable to relieve. Suspecting something was wrong with the 15-month-old’s immune system, he sent her to a lab for an HIV test.

“When it came back positive, I was astonished in such a small child,” he told the Telegraph. “The father and mother were negative. Her siblings were also negative.”

He began sending other patients for tests and was even more shocked by the results. In 20 days, 20 more patients had tested positive. He went to the town’s local media.

Waqar Ali, three, sits on the ground in front of five-year-old Abdullah Khan (left) and six-year-old Zeeshan Ali. All three were diagnosed with HIV in Subhani Shar village, around 8 km from Ratodero

Gul Bahar Sheikh, a 40-year-old reporter for local channel Sindh TV News was one of the first journalists on the story. He had already seen social media postings of a man complaining he could not get public treatment for his 17-month-old daughter suffering from HIV. When he spoke to the man, he said five other families were in the same situation.

The first television reports in the last week of April triggered panic. As far as health officials knew, the only previous local cases had largely been confined to high risk groups like sex workers and drug addicts.

“The whole city was shocked and surprised and people were asking what has gone wrong? But the surprising issue was that the parents were negative and the children were positive,” Mr Sheikh said.

As word spread, a government screening camp was overwhelmed with up to 1,800 people a day and sometimes 50 or 60 being tested positive.

Officials quickly pointed to a culprit. Many of those affected had been treated by Ratodero’s only paediatrician, Muzaffar Ghanghro. The doctor worked at a local public hospital, but also ran a thriving private practice.

Residents took their sick children to him where he often prescribed injections or IV drips. The biggest story Mr Sheikh had ever reported on had suddenly become horribly close to home. The paediatrician had treated all of the reporter’s seven children. 

He and his wife took them all to be screened and found his youngest daughter, two-year-old Rida Batool, was positive.

Gul Bahar Sheikh and his wife shower affection on their two-year-old daughter, who has been shunned by other relatives since her HIV diagnosis

Gulbahar Sheikh takes a rickshaw with his two-year-old daughter Rida Batool as part of a 30 km journey to receive HIV treatment

“That is the tragedy. When I was trying to put out the fire, I didn’t realise that the disease is also in my own house,” he said.

His daughter’s infection has seen her shunned by his own relatives.

“My wife and I are educated. We hug our daughter and love her, but when our relatives come they push her to one side,” he said tearfully.

Dr Ghanghro was arrested within days and accused of spreading the disease deliberately. Local anger against him rose when it was disclosed he was HIV positive himself. An investigation team later rejected the allegation he had spread the virus deliberately, but he remains on bail and is accused of being a major source of infection.

Now working at a rural health centre, he told the Telegraph he had done nothing wrong and denied sharing needles between patients. As a qualified doctor it was impossible he would use unsafe practices, he said. He believes he was infected with the virus himself during blood transfusions when he lost his foot in a road accident three years ago.

Faraz Rabail, three, has been diagnosed with HIV along with 11 of his family members

The outbreak is almost certainly the fault of more than one doctor, health officials said. Lax safety rules and the reuse of syringes or needles happen among both the town’s registered medics and unregistered quacks. 

Medical waste is not safely disposed of and syringes are even recycled in the bazaar and sold again. Unsterilised dentists instruments and barbers’ razors, and poorly regulated blood-transfusions all add to the risks of spreading blood-borne diseases.

The number of new infections has now slowed to one or two each day, but as the initial panic subsides, health officials are left with the question of how to stop the spread of the infection and how to treat those who have it.

Medics at Pakistan’s AIDS Control Programme admit they were overwhelmed to start with. There were not enough medicines or staff to address the crisis. Parents complain they were not receiving medicine and have to travel 20 miles from Ratodero to Larkana to get drugs.

Health officials now deny there is a shortage, and say a clinical service to treat patients is being set up from scratch. More than half of patients are receiving antiretroviral drugs and the rest will be as soon as they are treated for other infections like TB.

Yet despite the reassurances, an estimated 25 HIV positive children have already died since they were diagnosed, in an area already hit by malnutrition and high infant mortality. Treatment for AIDS is patchy at best in Pakistan, with the United Nations estimating 6,400 died from the disease last year.

Dr Sikander Ali Memon, director of Sindh’s AIDS control programme, said: “Not all the patients have been provided all the treatment because certain people have prior infections, like TB. When they get cured of those, they will start treatment of HIV.” He said so far 600 are on antiretroviral drugs.

He said a public information campaign would run to try to remove some of the stigma surrounding infection, which many still associated with sex or drugs.

Mohsin Ali, 11

Jeehjan, aged three

Muhammad Ilyas, three

Lax infection control among doctors and lack of education among the public means the virus is almost certainly still spreading as well. Such problems are not restricted to this corner of Sindh either, raising concerns there could be other undiscovered outbreaks elsewhere.

“The truth is the infection control practices in Larkana are not very different from other cities of Pakistan,” said Dr Fatima Mir, a child health expert at Karachi’s Agha Khan University. “There is quackery, there is poor and unsafe injection practices. The baseline knowledge of infection control even in registered practitioners is very poor.”

The United Nations estimates a total of 160,000 people had HIV last year in Pakistan, up from 67,000 in 2010. But screening is minimal and the true figure could be far higher. Until March, only 1,400 children had ever been registered with the national AIDS control programme and since then 800 new child cases have been found in Ratodero alone.

As Mr Sheikh watches his daughter play in his home above a shoe shop, he fears that Ratodero’s HIV-infected generation will need more than medicine. He is worried about hundreds growing up as outcasts unless a public education campaign informs people how the disease is spread. He said he had seen women in remote villages chained up outside their homes after testing positive, as ignorant relatives tried to keep the infection at bay.

“What I fear is that many more will die and even those like us who are getting treatment, their children will go to school and people will hate them,” he said.

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