Sagheer Bheel doesn’t want to answer questions about the HIV outbreak in Larkana or give an interview. He has no time for such trivialities. Instead, he just wants one question answered and he is approaching anyone who seems even remotely capable of answering it.
“Will my child make it?” he asks, his Urdu and his spirit both broken. In his slender but powerful arms, he holds a fading baby. One and a half months of fever and diarrhoea have rendered his frame skeletal. The big brown eyes are even bigger in their sockets.
The baby’s symptoms were also severe cough and pneumonia. Bheel knew what these illnesses were capable of wreaking on their own. What he could not comprehend, however, was the name of the strange-sounding ailment, HIV, which he hears for the first time at the camp in his village at Ratodero.
He had hoped that the people at the camp would have answers and a cure. He got an answer but no cure. And so now he is going around asking everyone if his child will make it.
Bheel’s son is one of nearly 550 children who were diagnosed last month with HIV in what is possibly the worst uncovering of the virus in Pakistan in recent years. It hit the headlines in early April when a private practitioner, Dr Imran Akbar Arbani, sent some sick children for testing because he had a nagging suspicion he was looking at HIV.
Bheel is one of many confused parents who had never heard of HIV before. But by now, he is slowly becoming familiar with it. When asked if he fears the virus may be transmitted to him and or his wife, he dismisses the notion with a sneer and runs his hands through his son’s hair with a smile and draws his even closer.
Fear and confusion
If parents like Bheel are confused over their child being found HIV-positive, others are still grappling with getting the test results they can trust. Dr Imran Akbar Arbani, who had discovered the outbreak, says he has diagnosed seven children who are not being recognised as HIV patients by the Sindh Aids Control Programme.
Ghafoor’s one-year-old son is one of them. “I had my son tested by the Aga Khan University Hospital facility in Larkana and they diagnosed him with HIV but I have gone twice now to the Ratodero camp and they said that he doesn’t have it. I just came back from there and they told me to come back in six weeks and threw me out.”
Ghafoor holds up several conflicting lab results. The ones by AKUH and another private facility show a positive diagnosis, while the aid control programme has twice diagnosed him as negative.
“This says that he should come back with the child in six weeks,” shouts Dr Arbani, waving the piece of paper around. “Can the aids control programme promise that this kid, who has such high fever and pneumonia, will survive six weeks without receiving treatment?”
But Dr Hola Ram, who heads the adult HIV/AIDS treatment centre in Larkana at Civil hospital, believes that private testing kits cannot be trusted. “Our testing kits are WHO-approved,” he says. “Some of the private clinics charge lower rates for the test than what the actual kit costs. How can they be using anything reliable?”
Ghafoor is not sure who to believe but there is no doubt in his mind that his son is slowly dying and he has no idea how to help him.
Ratodero has a population of over half a million. As of Tuesday, May 28, the numbers of people testing HIV-positive were 700 out of which 550 are children under the age of five years. An estimated 20,000 people have been tested. The numbers paint a worrying picture and Dr Arbani believes the total number of HIV patients will rise to the thousands.
Some doctors feel the outbreak has only just begun. Others believe it is now under control. One even labelled it “a blessing in disguise” since it was caught early and could help get the children treatment so they don’t develop full-blown AIDS.
WHO aid to stay alive
The treatment comes in the shape of antiretroviral drugs, which the HIV-positive people have to take to keep the virus at bay for the rest of their lives. If they fail to do so it eats away at their CD4 cells—white blood cells that fight infection. A CD4 cell count of less than 200 is diagnosed as AIDS.
“Normal CD4 cell counts range from anywhere between 500 to 1,500,” said Dr Shah Muhammad Shaikh, SACP’s HIV physician in charge of the Ratodero testing camp. “Luckily we have managed to diagnose these children with HIV at an early stage since most of them have CD4 counts still within the normal range.”
The doctors were not clear about the exact prices of the medicine—currently being provided by the WHO—but it is clear that they are beyond the pocket of the average person in Larkana and Ratodero.
By Tuesday, a WHO team had arrived to investigate the cases. One WHO official told Dawn newspaper that before this outbreak there were only 1,200 children with HIV in all of Pakistan. Now the number is 550 in Larkana alone and the culprits it seems are doctors. On Wednesday, May 29, the Larkana police declared at a press conference that they had registered cases against 24 privately practising doctors for medical negligence.
“Most of these cases are due to quacks working in private clinics,” says Dr Irfan Shaikh of the children’s centre. His claim is corroborated by several other people working there: Dr Shah, Dr Hola Ram, Dr Arbani and Larkana SSP Masood Bangash.
A majority of the cases, they all explain, are of children testing positive for HIV while neither parent has it. There is no evidence of paedophilia, few of them have undergone blood transfusions, and almost all have gone to private clinics.
“This is not the work of only Dr Muzaffar Ghanghro though,” says Dr Arbani, referring to one doctor who was initially arrested on charges of deliberately infecting 42 patients. An investigation was opened into whether he did it deliberately. SHO Bangash said that they found it was not deliberate but medical negligence, however, he is still in custody. “All the doctors here are all too eager to use injections and most of them reuse them. I have a strict anti-prick policy at my clinic. I never use injections on children. I urge all doctors to do the same.”
The Sindh Regulation and Control of Disposable Syringes Bill was passed in 2011 in which it is stated that ‘no person shall manufacture, sell or use disposable syringes other than auto lock, auto destruct or auto break for injection, drawing of blood and other purposes’.
The law is being ignored in Larkana’s Civil hospital, let alone in private quack clinics across the region. SHO Bangash says over 70 clinics have been shut down in Ratodero and Larkana since the outbreak but the Sindh government’s actions seem too little and too late.
The major organisations working on the outbreak include, the SACP along with the Sindh Health Department, the National Aids Control Programme, UNICEF, WHO, the People’s Primary Healthcare Initiative and the Integrated Health Service.
The SACP has been running since 1995 but this outbreak raises the question of what kind of prevention programmes it was pushing through. Clearly people were not aware of the risks in general to catching HIV. SACP’s HIV physician in charge of the Ratodero testing camp, Dr Shah Muhammad Shaikh, supplies the answer: “We mainly target high risk populations such as prostitutes and drug users,” he says. “Children are not high risk.” They never factored in that children could be infected with reused needles.
The SACP does not have a programme for schools and as of the filing of this report, Dr Shah admitted that they needed a more comprehensive plan beyond just a few sessions at schools in Karachi.
A lot more work will need to be done to get people the kind of information and support they need about HIV and AIDS. The most urgent cases are the directly affected families in Larkana whose children will be growing up with HIV.
“These poor kids are too young to understand right now,” says psychiatrist Dr Zulfiqar Ali at the antiretroviral drug centre there. “The pressing issue right now [is the mental health] of the parents.” The diagnosis affects the entire family. “The effects on the child are not as immediate as the ones on the parents.”
Meanwhile, all over Ratodero and Larkana, Bheel, Ghafoor and countless other parents continue to ask themselves, God and government, and everyone else around them that same question over and over again: Will my child make it?