Mehar*, a 30-year-old resident of Larkana, had been facing frequent bouts of fever and increased susceptibility to diarrhoea. But to her disappointment, no medication improved her condition. Given the dearth of quality healthcare in her city, Mehar was advised to see a doctor in Karachi. Little did she know, the visit would change her life.

“There is nothing I fear anymore. The worse has already happened: I was diagnosed as being HIV positive,” she says letting out a long sigh of despair. “I remember I was puzzled. I am unmarried and sexually inactive, and have never even touched drugs. How is it possible?’’ she recalls. To her dismay, her doctor did not provide an explanation and instead rushed her out of his clinic after prescribing her an antiretroviral treatment (ARV).

“There was no one to guide me or explain what had happened. I couldn’t risk asking a friend or family member, I was too scared of being judged and looked down upon,’’ Mehar tells EOS.

As the number of HIV cases increase in Pakistan, the need for better awareness campaigns and trained counsellors is ever greater

“Having been left with no other option, I turned to the internet. The virus was transmitted through a contaminated blood transfusion during an invasive surgery I had around a year ago,” Mehar concluded. “It took me months to gain my parents’ support and explain to them that there are other modes of transmission besides sexual activity. My father is a government officer, we are educated people. But HIV infects relationships. It’s like I committed a sin by merely existing,’’ she laments.

But whether the virus is caught from an HIV-tainted blood transfusion, an infected needle or through unprotected sex with an HIV carrier, there is an urgent need for counsellors to help AIDS and HIV patients deal with the social trauma that comes with being labelled a person living with HIV or AIDS.

Aside from being highlighted every year on World Aids Day, the Human Immunodeficiency Virus (HIV) barely registers a blip on the radar in Pakistan. Despite, a few news reports citing the ‘alarming’ rise in HIV prevalence, carriers of the deadly virus continue to face social stigma because its transmission is associated with sexual mores that are frowned upon in our conservative setup. More needs to be done to combat this stigma.

HIV/AIDS counselling could be one way that assists people infected with HIV/AIDS to make informed decisions, cope better with their condition, lead more positive lives, and prevent HIV transmission. The changing nature of the illness imposes a variety of psychological and emotional strains on individuals and those closest to them. Taking into account the dilemmas associated with it, the effects of HIV epidemic are enormous. AIDS, in fact, should seen more as a psychosocial phenomenon than a disease.

“HIV is not just a disease, it is a mind-set. There is a 74-pages-long document by the National Aids Control Programme (NACP) entirely dedicated to counselling guidelines for HIV/AIDS,’’ points out Ahmed, an HIV patient and counsellor at an NGO dealing with similar cases. “Will the patient cope with the disease itself or deal with the societal consequences surrounding his or her condition?’’ he questions.

HIV/AIDS is a condition that often generates fear, misunderstanding and discrimination. Misunderstandings are created by inaccurate or insufficient knowledge related to HIV and fear of contracting the disease.

“It’s very difficult to find HIV counsellors in Pakistan. They show apprehension to be part of the sensitive process as stigma surrounds anyone dealing with AIDS,” says Ahmed. “Almost as if we are the untouchables!’’ he remarks in a melancholic tone while explaining why he opted to become a counsellor.

“You cannot expect a single treatment to help a person battle both physical and psychological symptoms,” Ahmed asserts. “Even on days my physical condition is better, my mental well-being remains vulnerable. Patients may survive HIV, but surviving emotional stress is 10 times worse’’

Who can become a counsellor?

As such Pakistan can easily increase its number of counsellors. According to the national guidelines provided by the NACP and the Joint United Nations Programme on HIV/AIDS (UNAIDS) Pakistan, a wide range of people can play a role in HIV/AIDS counselling provided they are trained for it. These include: doctors, nurses, community health workers, social workers, and other care-providers; full-time counsellors (e.g. psychologists, psychiatrists and therapists); religious leaders and other community-based workers; trained community members, members of AIDS support groups, and other people living with HIV/AIDS.

The problem though is that there isn’t a system in place to ensure more counsellors end up practising in the HIV/AIDS field. “The scope of counselling, in general, is very limited in Pakistan. Students graduating with MA, MSc in psychology are not trained to counsel. Where will the counsellors come from?” asks Dr Haroon Ahmed, a senior psychiatrist heading the Pakistan Association for Mental Health.

“Anyone can become a counsellor with proper training. But due to the limited awareness regarding its prospects, people are not willing to give in the time and patience required to become a counsellor,” Dr Ahmed points out.

The problem

The NACP reports that over 130,000 people are infected with HIV in the country while, according to the Sindh Aids Control Programme (SACP), Sindh had almost half of the country’s total HIV population — 56,969, out of which 42,000 were in Karachi. These are the highest figures reported in the past 20 years in the country.

In spite of these startling estimates, Sindh’s health-care delivery system and whether it can cope with the increase in HIV cases have worried health experts. “With over a thousand patients visiting the SACP’s largest HIV treatment and referral centre in the Civil Hospital in Karachi per week, the facility has no infectious disease specialist to date. The ARV centre is in fact managed by a single medical officer,’’ shares Dr Beenish, an infectious diseases specialist at Indus Hospital’s ARV centre.

“With a psychosocial counsellor at the clinic, patient follow-ups have dramatically increased,” says Dr Asim Basit, programme head of the HIV centre at Indus Hospital. “The average flow of patients ranges between 40-45 per day out of which at least half of the patients come for a follow-up,’’ he adds.

Prevention is better than cure

Pakistan is categorised as a low-prevalence but high-risk country for the spread of HIV/AIDS and it is high time the health authorities began tackling the problem. One way to do so is to increase awareness about how the disease is transmitted — through infected blood transfusions, infected needles and unprotected sex. Promoting safe sex and the use of clean needles among drug users can be done at a minimal cost.

A system for testing blood at blood banks also needs to be set up urgently. Pakistan encountered a massive HIV outbreak in 2016 when more than 50 kidney patients, receiving renal dialysis at Chandka Medical College (CMC) in Larkana contracted HIV through blood transfusion. CMC hospital was found to be operating dialysis machines without standard operating procedures (SOPs) for Hepatitis B and C and HIV.

“A large part of the counselling process helps people understand blood safety, screening and transmission risks,” says Fauzia, a psychosocial counsellor for HIV. “There is a 90-95 percent chance that someone receiving blood from an HIV-infected person will contract HIV, this issue is not taken as seriously as it should be,’’ stresses Fauzia.

The deadly virus has also began affecting a very young segment of the population. A few years ago, 10 children suffering from thalassaemia (an inherited blood condition that results in a low haemoglobin count) got HIV after receiving infected blood.

“Forty percent of the registered children have been infected with HIV through contaminated blood, blood products or non-sterile equipment,’’ says Dr Fatima Mir of the paediatrics department at Aga Khan University Hospital.

Dr Mir adds that it’s very important for parents to let people know of their children’s condition but social stigma prevents them from doing so. “They cannot share the child’s condition with schoolmates and teachers for fear of being ostracised way early in life,” points out Dr Mir adding that in such cases counselling becomes even more important for the parents and the child.

A blend of taboos

The news of HIV infection creates uncertainty about all aspects of the person’s life, including the quality and length of life, the effect of opportunistic infections and the response of society to the illness. These issues need to be discussed openly and frankly.

“In a culture like ours, it isn’t easy to get people to share intimate details of their lives,” says Fauzia. “Women hesitate to talk about sexual practices, their number of partners and sexual preferences. Men, on the other hand, are reluctant to confess to illicit drug abuse. Then there is the use of contraceptives. It’s like dealing with one taboo after another,” she says.

“Eventually, patients stop coming in,” Fauzia tells EOS. She looks disappointed as she shares anonymous anecdotes of her clients facing severe difficulty in coping with mental pressure.

The society needs to make an effort at stigma reduction but social attitudes do not transform easily. The progress being made toward HIV counselling, testing and treatment must not halt and this is the only way discrimination against HIV-affected individuals can be reduced.

** Name has been changed to protect privacy*
The writer is a member of staff

Published in Dawn, EOS, June 18th, 2017