IRIN Web Special on World AIDS Day

Sitting in his simple two-roomed house in the back streets of the northeastern city of Lahore, 47-year-old Mohammad prepares for the worst. His face, chest and back riddled with an extreme form of herpes, the former master tailor is anxious when the doctor enters. But once he has heard the news, his wife struggles to comfort him as he bursts into tears. He is HIV-positive.

In what for millions around the world has become a death sentence, Mohammad must now live with intense social stigmatisation both of himself and his family. His neighbours will look away when they see him and whisper when he passes. In many ways - in his community - he has become an untouchable.

Impoverished by months of unemployment, he wonders out loud if he will be able to endure the shame he will now have to live with - the same shame that will ultimately kill him. How will his family be able to survive without him, he asks. Shaking his head in disbelief, the father-of-five told IRIN that life would never be the same - in many ways immediate death was more acceptable.

In conservative Pakistan, such topics are not easily discussed. Few understand what it is like to live with HIV - even less want to. Officially, there are 1,710 people living with HIV in Pakistan today, a nation of over 140 million. However, given the taboo nature of the subject, few infected people disclose their status. Some experts estimate the true number of HIV-positive people to be closer to 80,000.

Whatever the truth, the conditions affecting those living with HIV in this staunchly Muslim nation remain largely obscure. "We don't know much about their problems," the national programme adviser for UNAIDS in Pakistan, Abid Atiq, told IRIN. "In some cases, society has failed to provide the necessary support and assistance these people deserve."

But for those living with HIV today, his comment is an understatement. While the last few years have seen dozens of progressive efforts by various organisations, including the United Nations and various NGOs, to raise awareness, few have offered to help those actually affected, thereby revealing the same ignorance they have purposefully worked to thwart.

To Nazir Masih, such attitudes are not surprising, but constitute his greatest challenge. Since 1999 as head of the New Light AIDS Control Awareness Group, a small Lahore-based NGO with minimal resources, he has dedicated his life to changing the lives and attitudes of people living with HIV by giving them hope when all else has been lost.

"There is a strong feeling of remorse and guilt for those people living with HIV," Masih told IRIN. "They feel they have lost everything."

That is something he knows about at first hand, for 12 years ago, while working as a shopkeeper in Dubai, he was diagnosed as HIV-positive. According to the 45-year-old, once his diagnosis was confirmed by doctors, he was promptly arrested and placed in solitary confinement before being deported back to Pakistan. "When my status was disclosed, people ostracised me. I was hated," he said. "In Pakistan, awareness level is very poor and people that are infected are abhorred."

As the first person in Pakistan to have his HIV status publicly disclosed, journalists took pictures of his family and children and published them in the local press. "It was a horrible experience," Masih said. "I would rather have died than spoil the lives of my family. I felt isolated and alone. I thought I was going to be stoned," he recalled.

Today New Light, by virtue of funding by the US-based Catholic Relief Services, remains the only NGO in the populous Punjab Province, with an outreach programme dedicated to actually helping those living with HIV. Working with a staff of eight and a small team of volunteers, the group strives to provide support and assistance for people many would prefer to forget.

"Our main emphasis is to save the lives of the families from this disease. Often by the time the husband discloses he is HIV-positive, his spouse is already infected. We work to avoid this. Secondly, we want to decrease the inferiority complex of those people infected. We encourage them to spend their lives positively and honourably," Masih explained.

But such things are easier said than done given public perception of the disease. When the first HIV case was diagnosed in Pakistan in 1985, the 35-year-old woman, who had become infected from a blood transfusion, was imprisoned. Though later released through the intervention of the courts, she died a short time later.

Sadly, public perception of those infected with HIV has changed little. One man, so diagnosed 16 years ago, told IRIN the problems facing those living with the disease in Pakistan were immense. "I don�t have much hope, nor any permanent source of living," the 40-year-old explained. "What helps me is the opportunity to share some of my problems with other HIV-infected people," he said.

Living in a rundown house near the Lahore railway station, with his wife, who is also HIV infected, he receives food and medical assistance from New Light, as well as the school fees to allow two of his seven children, ranging in age from five to 16, and all of whom are HIV negative, to continue their education.

"Life is a constant struggle," he told IRIN, as his wife lay on her bed prostrated by fever. "We would like to be open with our status, but cannot afford the difficulties we would face. It would simply be too much."

Asked how he had contracted the disease, he shrugged and pleaded ignorance. This was one answer he didn't wish to disclose - a reaction quite common in this conservative society. "Sex is very much a taboo subject in Pakistan, which makes our work hard," Masih observed.

Indeed, of the 30 HIV-infected people he is working with, eight are women. All but one of them were infected by their husbands.

Meanwhile, in another part of Lahore, a more harrowing drama of tragedy and courage is unfolding. Once married to a man who had worked in Africa, 33-year-old Rabia recalls how her husband committed suicide after learning he had infected both his wife and children. "He was devastated. The guilt was too excruciating," she said.

Shortly after her husband�s death, Rabia buried her two young children as well. "I thought it was my turn, but it never came," she said. "For me, life was over."

Under normal circumstances it would have been, had it not been for a chance meeting with a young handcart operator, whom she subsequently married, Although a simple man with no education, earning just US $30 per month, his wisdom and understanding ran deeper than most. "I knew she was HIV positive, but I loved her," the 30-year-old told IRIN.

Initially using condoms, they later stopped doing so when they decided to have a child. Despite the risk, they felt having a baby was a way of showing their love for each other. Today their three-month-old daughter - who was provided with milk by New Light rather than be breast fed by her mother - appears healthy. Nonetheless, doctors will routinely be checking her HIV status, as well as her father's, indefinitely.

It was a dangerous move, but one Rabia and her husband of 18 months cherish every day. "Now that I have a baby, I have hope for the future," she said.

But for most HIV-positive cases in this South Asian country, hope is a luxury they cannot afford. Their situation remains grim, their lives increasingly dark.

Working at New Light, Dr Abdul Rashid, a retired public health professor at the Institute of Public Health in Lahore, told IRIN that medicine was not an option. "Patients are receiving treatment of common ailments such as cough, diarrhoea and opportunistic infections such as herpes - but that is all," the 62-year-old said. "Anti-retroviral drugs are out of the question. People simply cannot afford them, and neither the government nor any donors are providing them," he explained.

And at over $300 per patient per month, he was right. "Who can afford that in Pakistan?" Masih asked.

While the government and donor agencies have promised to supply such drugs in the future, that time remains a long way off for those actually infected. Just recently three New Light members had died due to the unavailability of such treatment, he said.

Though HIV infected himself, Masih takes no anti-retroviral drugs and, despite his outwardly healthy appearance, also knows that his immune system is weakening. "Opportunistic infections are becoming more prevalent," his doctor said, noting recurrent bouts of diarrhoea, dysentery, and fungal infections in his mouth.

Asked what kept him going, Masih admitted that he sometimes felt depressed, but tried to be optimistic. "My work keeps me going," he asserted.

And indeed it does. Using the NGO's only source of transport - a motorcycle - the man, who earns his living repairing bicycles, travels all over the Punjab Province, often visiting patients living 500 km away. Upon learning of new cases, he works on establishing communication with them to determine their needs and how they can be helped.

"Whenever a person becomes HIV positive in Pakistan, as a matter of policy, that person is fired," Masih noted. "Their livelihoods are crushed."

In fact, most of New Light's cases have lost their jobs and are dependent on the limited amount of assistance the NGO tries to provide.

According to Masih, who has become an unsung hero of the forgotten, it is discrimination and stigma which are the pivotal challenges facing those who are HIV infected - a clear sign for a greater need of awareness. "People's attitudes towards us remain our struggle," he said. "When people first learn that I am HIV positive, they are even hesitant to shake my hand or even talk to me."

But overcoming such prejudice will not be easy. While Pakistan remains a low-prevalence country as regards AIDS, reality tells us much more is needed to stop its spread. As part of its overall strategy, the government has prioritised awareness and prevention, but actual assistance to those infected seems a long way off.

Atiq maintained that given the few HIV-positive people on the surface today, as well as limited donor interest, it is easy to understand the emphasis on prevention rather than social support. Nonetheless, he added, the plight of those actually infected could not be ignored. Only with greater assistance and support could the true number of cases be revealed - giving the government a stronger opportunity to deal with the problem more effectively, he explained.

Meanwhile, as the world commemorates international AIDS day on Sunday, experts will talk and heads will nod in agreement on how to deal with the global pandemic. However, the real test, as seen by Masih, remains action not words.

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