KARACHI: The Ratodero HIV outbreak shook the country last year but unfortunately our plight has been forgotten and we struggle to pick up the pieces of this huge blunder, parents of HIV-positive children from the dusty town of Ratodero, Larkana, said on the eve of World AIDS Day.

According to the Sindh AIDS Control Programme (SACP), as of Nov 30 some 42,533 individuals have been screened and 1,438 of them are found to be HIV positive, who were registered at the ART Centre in Ratodero.

Of these, 1,076 are children including 666 boys and 410 girls.

The SACP confirmed that 34 children and four adults from the Ratodero outbreak have died.

What started out as attention-grabbing headlines of ‘HIV-positive doctor caught for spreading AIDS in Larkana’ ended up as a sordid saga exposing a poor healthcare system and lack of accountability.

Over 1,000 kids have been tested positive for HIV in and near the small town

Talking to Dawn, many parents shared harrowing accounts of social boycotts from family, friends and community.

“What has happened in Ratodero is a big mistake and no one has been held accountable. We thought the media attention would lead to some improvement but nothing has changed,” said SNH, the father of a young girl, ‘Baby E’, who contracted HIV after being exposed to contaminated syringes.

It was the father’s persistent use of social media that eventually led to Ratodero’s HIV/AIDS outbreak being highlighted in the national and international media.

According to infectious diseases experts, it was poor infection control practices (ICP) — including reuse of syringes and unscreened blood — that lead to the spread of HIV in Larkana district’s general population.

Rude awakening

“Last year, my daughter was ill. When a local doctor told me to get her checked for HIV I lost my temper but he persuaded me. My head was spinning when I saw her report,” the father said. More shock awaited him as he realized there were hundreds of children with the same status.

“I thought my daughter would die, she was so weak. I spent 19 days in Karachi’s Civil Hospital and later another 16 days at Aga Khan Hospital. That one month cost me Rs700,000,” he said.

An educated, middle-class individual, the girl’s father is a rarity among the Ratodero outbreak parents who understands what HIV/AIDS is and its lifelong impact.

The HIV epidemic in Larkana district is also not a new one. The first HIV case was reported there in 1995. Eight years later, in 2003, the city garnered attention when the first outbreak of HIV among injecting drug users (IDUs) was reported. Out of 175 IDUs, 17 were confirmed positive. In 2016, the outbreak in the haemodialysis unit of a public hospital in Larkana made headlines and the number of HIV-positive people in the district crossed the 1,200 mark.

SC said he was struggling since his son’s positive status became known. “I am a daily wager. People from my tribe mistreat me and my family. The elders said we are dirty people.”

He said he was able to get ARVs [antiretroviral] but does not have enough money to buy powdered milk and supplements, which will give strength to his son. “HIV has made things worse for me and family. I used to go to Larkana looking for odd jobs but work has dried up. People fear HIV more than coronavirus. Many won’t allow me to stand near their door, let alone enter the house” he said.

MJ, a young mother, shared similar views.

‘I will sell my kidneys to feed my son’

“One of my sons tested HIV positive and it hurts me so much. My immediate family is supportive but others are not. Playing with other kids ends up becoming an issue as women bar their kids from playing with him,” she said.

“We are struggling to make ends meet. We get good milk and food for him now but he is still weak. He is my son and I will sell my kidneys to feed him but my other children suffer as we try to make ends meet,” she said.

Talking to Dawn, Dr Imran Akbar Arbani, the doctor who suggested to the parents to get their sick children tested for HIV, said it’s an ongoing struggle for the families. “Most parents are very poor and unable to understand what ails their child.

“There is a dire need for a rehabilitation programme. We do some relief work on our own but these children need something sustainable,” he said, adding that poor infection control practices must be looked into.

Responding to Dawn, the Sindh Healthcare Commission (SHCC) said the body was working on safe injection practices while it had signed a memorandum of understanding with the Medical Microbiology and Infectious Diseases Society of Pakistan for training of doctors and nurses across the province based on Sindh Service Delivery Standards.

“Since the outbreak we have been trying our best to raise awareness about quackery and safe disposal of hospital waste. We are asking clinics and hospitals not to throw used injections,” said Dr Ahmed Raza Kazmi, SHCC’s director clinical governance and training.

When asked about the status of the Rs1 billion endowment fund set up in the aftermath of the Ratodero outbreak, SACP additional director CDC-I for Enhanced HIV/AIDS Control Programme Dr Saqib Ali Shaikh said: “Mothers with HIV-positive children will be the beneficiary of this fund. We have been working on the documentation of mothers, many of whom did not have CNICs. Initially, some 200 bank accounts will be opened up in December. Transfer of money to mothers will ensure the children benefit from this fund.”

Meanwhile, SNH and other parents said that the government must ensure that their children were not discriminated against. They must be provided educational opportunities while jobs should be given to parents, they added.

The parents also urged Prime Minister Imran Khan to ensure their kids receive ‘HIV-positive health cards’ and inclusion in Ehsaas programme. They further requested Pakistan Peoples Party chairman Bilawal Bhutto-Zardari, who was elected as MNA from Ratodero, to ensure that the Rs1bn endowment fund was put to use.

Names have been abbreviated to protect privacy.

Published in Dawn, December 1st, 2020