Living with AIDS in Pakistan
By Saleha Rauf
4 May 2016
It’s time to tackle the fear AIDS engenders.
“They left the mohalla in the dark; they did not tell us where they were leaving for,” said a local in Mohalla Sakhi Sarwer, when asked about the whereabouts of the people who were HIV-positive. Located behind the shrine of Shah Sakhi Sarwer, the area is populated by poor working-class families, situated in a small village in the Sulaiman Mountains, 35 kilometres away from Dera Ghazi Khan. Some locals believe that it is only because of the Sufi’s blessings that people are able to survive in this barren area. Sarwer, who took refuge in these mountains in the 12th century was killed by his relatives in 1174 CE. His devotees: Hindus, Sikhs and Muslims, all come to the tomb for the annual festival. The festival is famous for its 100 mann (1 mann=40 kilograms) niaz; made of lentils and dry fruits that is distributed among the devotees who come to the Urs from across Pakistan and even beyond the borders. This event, by virtue of its popularity, creates livelihood opportunities for the adjacent neighbourhoods who serve the pilgrims.
A month before the festival starts in the month of Vaishakh, many women and men from other parts of the district flock to Mohalla Sakhi Sarwer. Many rent houses and turn them into guest houses that will later welcome devotees. They offer their guest cheap accommodations, food, and sometimes cheap, and often unsafe, sex. They even employ local woman and men as sex-workers for the dhanda (prostitution) during the festival season.
The shrines also attract drug-addicts who gather here for free food and the sanctuary it offers them. They are sometimes even respected as Majzoobs; a Sufi notion for people who are so absorbed in God that they do not know how to interact with others in a sociable manner. Most people visiting the shrines do not look down on such people, some even give them money. The shrine has thus become a safe haven for these people, who face immense rejection from mainstream society.
Fear of humiliation
As of December 2015, most of the AIDS patients in the Dera Ghazi Khan district were from the Sakhi Serwer Union Council, the administrative area where Mohalla Sakhi Serwar is located. Given the fear of AIDS, people from other neighborhoods have socially boycotted the area. Very few interacted with the people living here, hampering their financial and social prospects, especially during the festive season. Things were so bad, says a local resident, that people would even stop talking to anyone seen coming from their mohalla. Then in January 2016, AIDS patients living in the area were forced to leave the locality because many blamed them for the social boycott. Under pressure, AIDS patients packed up and left the area without telling their neighbours during winter.
This incident highlights the huge stigma against HIV positive and AIDS patients in Pakistan. Many people, especially in rural area, still think that it is a contagious disease and they stop interacting with HIV-positive people. This mindset exists despite an acknowledgement that communication and awareness play an important role in disease prevention and the eradication of stigma. In fact, ads about AIDS awareness have been a part of mass media since the early 1990s in Pakistan. Over the years, the strategy has seen changes and now many NGOs work under the UNAIDS organisation and the National AIDS Control Program, to get the word out. Yet, much needs to be done.
The number of HIV-positive patients cases reported in Pakistan increased in early the 2000s to such an extent that UNAIDS declared Pakistan had moved from ‘low prevalence, high risk’ category to ‘concentrated’ epidemic status in the early to mid-2000s. According to a March 2015 UNAIDS report, the epidemic is mainly concentrated among two of the key population groups: people who inject drugs have a national prevalence of 27.2 percent (weighted prevalence of 37.8 percent), and Hijras Sex Workers (HSW), who constitute 5.2 percent. The frequency among Male Sex Workers was at 1.6 percent. The prevalence in Female Sex Workers was low at 0.6 percent.
The first HIV-positive case in Pakistan was reported in Lahore in 1992. Nazir Masih, a migrant worker who was affected by the virus during his stay in the UAE, was deported from that country in 1990. In his interviews, Masih talked of how he was scolded by his brother who was working with him abroad when he heard of it. He kept his disease secret for a couple of years and was even fooled by a doctor who said that the disease was curable and he will be able to go back to UAE once his HIV status was reversed. Nazir had to sell his house to pay a fee to this doctor. After ripping him off, the doctor reported him to the health department. It was a nightmare as he faced immense humiliation in his neighbourhood.
Once when an ambulance picked him up from his house after getting information about his HIV status – to take him to a test centre in Islamabad – his children were not allowed to sit in the van seats with him. Nasir felt he had brought shame to his family. Worse still, he thought he may have passed on the disease to them. Thankfully, they tested negative. Given the humiliation and fear, he began having suicidal thoughts which haunted him till he was sent to attend a seminar in Philippines by the UNAIDS in 1997. The seminar gave him some hope and he stopped blaming himself and decided to help those who are suffering from the disease by setting up an NGO; New Light AIDS Control Society was registered in 1999.
According to the UNAIDS report, the HIV ‘epidemic’ in Pakistan started when cases surfaced mostly in migrant workers working abroad in early 1990s. For almost two decades, the assumption of low prevalence continued in the country till the surveillance studies in Karachi conducted by the AIDS control program exposed an expanding epidemic in Injecting Drug Users in Karachi (26 percent) and Larkana (9.7 percent). This survey changed the entire approach to AIDS prevention and treatment strategy for the health authorities in the country – including the NGO sector and the WHO – who then conducted four HIV and AIDS surveillance rounds for the next ten years. It exposed a well-entrenched concentrated epidemic in people who inject drugs (PWID) in whom the national prevalence has reached 27.2 percent in the last round of Integrated Bio-Behavioral Survey Pakistan (IBBS) surveillance in 2011.
There is now an informed effort to step up treatment and rehabilitation. According to a statement issued by the Punjab Government on 29 February 2016, more than 9450 HIV-positive people have been reported in Punjab till January 2015. Of a total of 6456 patients registered for treatment, 4213 are receiving regular Anti Retro Viral Therapy (ART) in Punjab. The prevalence of the disease among Injecting Drug Users (IDUs) is 34.5 percent. About 17,000 IDUs, 16,500 Female Sex Workers (FSWs) and 10,000 Male/Hijra Sex Workers (MSWs/HSWs) are being provided prevention services through 10 Service Delivery Projects in Punjab.
Talib Hussain from Muzzaffargarh, who was affected by the virus through injecting drugs, is undergoing treatment at the AIDS centre in Dera Ghazi Khan. He talked to me of how he feels helpless and depressed when he thinks of his situation. “I call the NGO people and tell them about my situation and then they say a few things that make me feel good about my life.” Hussain says no matter how hard he tries, it’s almost impossible to get out of the situation that he has put himself into. He had been doing drugs for the last 20 years and never got himself checked. Then some people from Nai Umeed, an NGO working under the UNAIDS and National AIDS Control Program, came to the area where they screened him along with four of his friends; only he was HIV+. In a hangdog tone he tells me, “When they told me about it, I was startled by the thought of having disseminated the disease to my wife and the children. As far the question of my life was concerned, I always knew that I will die soon because many of my age died in their early 30s and I was on ‘overtime’.”
He said his family was already putting up with his drug addiction patiently but his HIV status was an immense burden on him. The guilt was overwhelming. “I started thinking that this was the end of my life as I have heard that ‘AIDS lailaaj hay’ (AIDS has no cure). I started to reconcile with my death but they insisted that I get treatment. I was reluctant because I thought they will stop my daily drug usage. I decided to give it a chance when they told me that this issue was also sorted out and I will get the minimum ‘dose’ of my drug till I learn to live without it.” Nai Umeed took Hussain to Islamabad for a year, where he says he was given “really good food and comfortable environment”. Then they brought him to the AIDS centre at Angoori where he was counselled.
Tariq Ismail Qureshi, a journalist who has been reporting on AIDS for the Express Tribune, said that though there has been an increase in the number of NGOs working for AIDS prevention, treatment and awareness and the continual increase in the number of the AIDS patients, casts a shadow on the efficacy of their work. There are about 2000 patients registered for treatment at the only centre set up by the National AIDS Control Program in south Punjab and there are at least 10,000 patients who are HIV-positive but are not registered for treatment. Qureshi says these efforts are not sufficient because they do not focus on the structural issues such as poverty, illiteracy and discrimination on the basis of the patient’s economic and social background that allow the disease to spread. If there were an effective strategy to tackle these societal issues, the number of patient would have decreased. Qureshi feels that the NGO strategy is limited to merely looking for the people who they think can be ‘useful’ for their mobilisation work and documentation. She suggests that looking at the issue through their organisation’s lens does not reflect “basis of the ground reality”.
“They don’t look at it [the crisis] from the patients’ perspective. That is where the problem starts, we need more sincere people in this regard, who understand the issue and instead of focusing on preparing the reports, they do actual work. The mobilisation strategy is, sadly, not very effective.”
Family, friends, and the state
Most of the people being affected by AIDS are those who are deported from the Gulf countries. These people work in meagre conditions and are often infected because they had unprotected sex. Social pressure and the fear of isolation are overwhelming, so much so that often they do not tell their families and friends about their HIV status. Some marry without informing their spouses or families.
As of 2012, about 400,000 workers left for Gulf countries for formal employment. A 2008 United Nations Development Programme report states that about 82 percent people living abroad were found engaged in the sexual contact with sex workers during their stay in the Gulf countries. According to the Pakistan Medical Association in 2010, nearly all patients in the HIV clinics in Pakistan were migrant workers or their spouses and children. These expatriated workers are often the bridge population for the dissemination of the disease. Consequently, the spouses of these labourers become the next victim of the virus.
And it is mostly men who are directly affected by the virus; only one percent of the migrant workers in the Gulf countries are women. Moreover, women also have less access to the injectable drugs given their limited financial independence and mobility. But it is precisely for these reasons that their access to the treatment, if they are HIV-positive, is also limited. According to the report issued by the National AIDS Control Program, one fifth of all diagnosed HIV cases were women and most of them were at a risk because they married to drug users or other HIV-positive men.
Qureshi believes that were the government to set up an AIDS screening machines at the airport, it would take only 15 minutes to screen the patients and keep their record for treatment. Or that if awareness about protected sex and blood transmission is done more effectively it will yield better results. For instance, Qureshi adds, that while people in tribal areas are the focus of much of the AIDS awareness programme, there is still need to make them aware that AIDS is disseminated through blood and semen only and not contact.
Professor Sobia Qazi, an AIDS expert at the Services Hospital, Lahore, tells me that amongst women, the lack of awareness and agency is even starker. Many women are unaware of the risks they face and are completely clueless about treatment. Most of the times, many women don’t have the ability to negotiate with their spouses for safer sex practices because it is considered a taboo subject in society. They have limited mobility and access to information when compared to their male counterparts. Qazi says that though male patients are advised that they have a moral responsibility to tell the person who they intend to get married about their HIV status, some of them keep it a secret. This causes irreversible damage.
Public health researchers, Adnan Ahmad Khan and Ayesha Khan, in their research paper, ‘The HIV epidemic in Pakistan’ state that most of the HIV-positive patients registered at HIV centres are from ‘conservative households’ and they do not disclose their HIV status to their families or friends and refuse to bring their spouses for free HIV services. Even when they do get counselling, the stigma associated with the disease is deeply entrenched. An AIDS patient from Shah Sadardin area, Ijaz Ahmad (name changed), for instance, was HIV positive when he returned from Dubai about six years ago. He kept it a secret, got married and had five children without telling his family. All of them are infected. Ahmed was going through the treatment secretly for almost six years. Now that the virus has become active in his wife and children, it is impossible to hide behind the facade of normalcy.
As a medical anthropologist, Dr Ayaz Qureshi says that marginalisation is the main cause of AIDS and the reluctance to get treatment. Qureshi argues that the host-state often sees the HIV –positive immigrant labourers with suspicion, who are then exposed to exploitation that increases their vulnerabilities. He said that if these immigrants are HIV positive, they are deported immediately from the country they were working in. They are not allowed to collect their papers or luggage. Most of the times they are denied any health check-up, only to return as ‘failed subjects’ – of no further economic use either to the host country or to Pakistan.
The prude state
The Bureau of Emigration and Overseas Employment educates the workers who intend to work in foreign countries about the safety, rules and regulations, law and the best way of sending remittance. They are also tasked with the responsibility of educating people about safe sex practices. But they often skip the slides related to safe sex practices or counsel inadequately in a way that suppresses the gravity of the disease. In his research paper, ‘Structural violence and the state: HIV and labour migration from Pakistan to the Persian Gulf’, Qureshi states that there are only a few slides in the presentations about AIDS. There are indirect exhortationsto safeguard against HIV that too through abstention. He related an instance where a senior officer who was giving the presentation diverted the attention of the audience by stressing their Muslim identity and religious codes to warm them off extra-marital sex:
Mashallah, Alhamdulillah, Subhanallah [all praise for Allah], we are all Muslims. We do not belief [sic] in any wrong deeds [ghalat kaam]. We believe in right deeds [sahi kam]. So when you go abroad, as you will be very careful about other things, you should also be very careful about wrong illegitimate relations because there are such diseases laying out there in abroad [aisee aisee bimarian bahar pari hui hain] that they can be dangerous for your life.
The briefings are supposed to educate them about the rules and regulations of work and sending back remittances, but in practice these become theatres to reinvigorate for one last time, the Pakistani and Muslim identity of the would-be migrants before they set foot outside the country’s borders.
Adnan Ahmad Khan and Ayesha Khan believe that limiting an open discussion on the prevention of HIV by using arguments regarding religious obligation or social norms to explain the risks involved restricts the propagation of correct life-saving information. Moreover, some Muftis consider contraception a sinful practice as well and don’t agree on the usage of condoms or other protection. Instead, they argue that preaching constantly against extramarital sex may push men into having sex with other men – a far more hazardous consequence in their view.
However, not all religious leaders agree. Mufti Abdul Qavi, advisor to the Federal Shariat Court, and chief Qazi at the Islami Adalat-e-Insaaf Pakistan says there is nothing against contraception in Islam. He said that the shabbas (the fellows of the Prophet Muhammad) used to use the ‘withdrawal method’ for contraception and the Prophet did not stop them. He said, however, that contraception should be used after mutual consent is obtained. He also said that there is no room for extramarital sex in Islam, so this applies to married couples only.
Correcting the message
The issue in Pakistan is not only that the message has not been communicated far and wide but also the nature of awareness messages. The executive program producer of Pakistan Television Network, Lahore, Mehmood Aali, who was the head of the in-house censorship board of the Pakistan Television Network, says that when this was the only national channel, anything transmitted on PTV had a ‘magic bullet’ effect. “I feel that the message was not disseminated with due responsibility. Moreover, the way it was transmitted, gave a very powerful misleading message to people. It was as if there was some magical power punishing those who are involved in ‘unethical sexual practices’. A silhouette shown at the end of a commercial was so misleading that it will take another generation to end the stigma around AIDS. If you decode the message you will get the following information:
AIDS maut hay (AIDS causes death)
AIDS lailaaj hay (AIDS is an incurable disease)
Apnay taluqaat sirf Shareek-i-Hayyat tak mehdood rakhaien (do not have sex with anyone except your legal spouse)
Aali adds that this campaign is contrary to what they want to establish and has not helped the prevention of AIDS. Moreover, it portrayed the disease as a Western disease for a specific class. “But now we have realised that this actually is a problem that affects marginalised groups and they need a total different advocacy plan in this regard. No wonder the HIV patients keep their disease a secret. Who would like to be judged for such things in such a conservative society?”
AIDS prevalence cannot be resolved in isolation. National AIDS Control Program, UNIADS and the different NGOs that are working collectively to eradicate AIDS need to have a better understanding about the social and economic background of the HIV-positive people. Those affected face many financial and social challenges while fighting their disease. Thus there is a need to educate people about safe sex practices through mass media campaigns; especially those who are leaving the country to work abroad. The fear of humiliation that the HIV-positive patients face cannot be addressed unless there is clear and effective communication strategies adopted by the state. Keeping in view the existing misconceptions, both the state and society in Pakistan needs to be better informed.
~ Saleha Rauf is a Lahore-based journalist with an interest are culture and political ecology.