UNAIDS Sewa Ashram Book Text pages

TABLE OF CONTENTS Acronyms Acknowledgments Foreword Introduction Case Studies Raju Das Javed Joyti Shambu Dinesh Dharam Singh Ravi Santosh Hari Shyam Geeta Maya Surya Neeraj Ajay Ram Ali Mukesh Abdul Vinod Mukhtar Girish Vijay Pal Neetu Iliyas Observations Recommendations 2 3 5 6 8 10 12 14 16 18 20 22 24 26 28 30 32 34 36 38 40 42 44 46 48 50 52 54 56 58 60 ACRONYMS ACKNOWLEDGMENTS Written by Ton Snellaert with input from Dr. Ashish Rohatgi and Kaye Kirsch. TB HIV AIDS DOTS ARV PLHIV ATT ART STD CD 4 MDR NGO OPD IDUs Tuberculosis Human Immunodeficiency Virus Acquired Immuno Deficiency Syndrome Directly Observed Treatment Short-Course Anti-retro Viral People living with HIV Anti-tuberculosis therapy Anti-retro Viral Therapy Sexually Transmitted Disease Cluster Dependent 4 Multi-drug Resistant Non-governmental organisation Out-patient Department Injecting Drug Users Prior to the interviews, Dr. Ashish Rohatgi, the consulting physician of Sewa Ashram, explained the purpose of this document and obtained verbal consent from the people written about. We thank our patients for sharing their stories and photographs for this publication. The author would like to acknowledge the following people who assisted with the drafting of this publication: Erin Collins, Daniel Allen, and Nino Figuerola. SEWA ASHRAM Singhu Border Road Krishna Nagar Narela, Delhi 110040 India Telephone : +91 9810 620 452 Email : office@sewa-ashram.org Website : www.sewa-ashram.org This work was done with the financial support of UNAIDS. The views expressed in the report are those of the author and are not intended as the official views of UNAIDS. 2 3 FOREWORD This report is not like other papers. It addresses the situation of young people living in absolute destitution in Delhi. These are people who live on the streets, eat when food is available -not often- and work with their muscles as long as they are strong enough, breathe polluted air and smoke, and are exposed to all sorts of risk factors.These are people nobody cares for, people without education, people without family, people rejected by the health system and any form of social support. These are people with a history of migration, but not migrants in the way the term is usually understood. These are migrants who have left their poor rural surroundings to seek a better life in the big city, generally without the hope of ever going back. They are exploited, confined to hazardous, hard and low-qualified jobs. Economic hardships, lack of family guidance and loneliness contribute to increased risks: accidents, drug use, infections, unprotected high-risk sexual behaviours and so on. As a result, many suffer from tuberculosis (TB), often undiagnosed, relapsed or sometimes multi-drug resistant, and many are positive for HIV. These are young people, on the whole living in desperate situations, without even the some-what supportive environment of a slum. Can the drug-using community that lives under the Yamuna flyover pass for supportive? One cannot help but be struck by the very low level of awareness they display: information and sensitization programmes have passed by without touching them. Nearly none had ever heard of HIV and AIDS before they were diagnosed with the condition. The overall gaps of the education and health systems and practices are brought to the forefront by this study. This is report is written by Ton Snellaert, in his own words, passions and convictions. It has not been edited by UNAIDS, which does not endorse all the positions taken by the author. Ton is one of those exceptional individuals who devote their life to others for the sheer love of humanity. He has provided all the individuals described in the report with care, affection, information and esteem; he has given them a home in Sewa Ashram and most owe him their life. Ton is not a mad original: he has surrounded himself with the best managers, doctors and physiotherapists. But he has also given each of the people described in this report completely selfless affection and permanent support so that they would finally have a chance in life. All characters in this report have accepted to have their photo displayed, in full awareness of the topic and purpose of the report, as a token of their appreciation for the support provided by Ton Snellaert and his exceptionally dedicated staff. I hope this report will help catalyze the development of strategies that will better address tuberculosis and AIDS control among the destitute population that most programmes ignore, but whose contribution to the epidemiology of infectious diseases cannot be neglected. Dr. Denis Broun UNAIDS Country Coordinator India 4 5 INTRODUCTION URBAN DESTITUTE : CASE STUDIES OF HIV & TB AMONG THE HOMELESS IN DELHI On a trip to India in 1996, I was shocked at the sight of a young man lying naked in a gutter, his emaciated body covered with bruises.Those passing by ignored him or looked the other way. I was trapped in a car as a passenger. Through the open window I saw hundreds of men sleeping for the night by the roadside, on a rag or a newspaper, or straight on the pavement, as if knocked out. That night, in a dingy hotel in Old Delhi I pondered the utter squalor and destitution I had seen, then opened my battered Bible and read the words of Isaiah 58:612. “Share your food with the hungry and bring the homeless poor into your home. When you see the naked, cover them… and your healing will quickly appear; and those from among you shall to raise up the foundations of many generations.” I took these words literally. These scriptures became the roadmap, the blueprint for what is now Sewa Ashram. In December 1997, I opened Delhi House, a small rehabilitation center with room for twelve patients in Narela1. I would roam around under bridges and flyovers and take in those destitute who were in immediate need of medical treatment. In the first year 45 people were cared for. Since then, more than 3,000 in desperate need have passed through Sewa Ashram. Today, the two-acre site of Sewa Ashram is a rehabilitation centre that provides free medical care and longterm rehabilitation for sick and destitute people in Delhi,India. It has a vibrant community of 150 - 180 patients and staff, with a clinic, tuberculosis wards, a children's education program and a vocational program. Plans are currently being made to expand the facility to accommodate more patients. All patients admitted to Sewa Ashram are encouraged to be tested for TB and HIV and additional counseling is done at Sewa Ashram. Free medical care is provided at our clinic, which is staffed by nurses, several social workers, and overseen by a doctor. For specialized care and critical patients, Sewa Ashram utilizes the services of local physicians and hospitals in Delhi. Approximately half of our patients suffer from tuberculosis and roughly ten percent are HIV positive. The average patient stays with us for six months. However, long-term care is offered to all patients because our goal is not just physical healing, but personal transformation. In this report, profiles of twenty-five Sewa Ashram patients are presented. It documents their journey from home, their experience of living on the streets, including indulgence in high risk behaviour leading to HIV infection and their subsequent medical needs. By sharing these profiles, we invite the reader to witness the bottom of a long spiral of exploitation, and to experience, while reading, what others have to bear their entire lives. We hope to inspire readers to seek more effective ways to care for the poorest of the poor and to simply respond with compassion when confronted with an individual face of poverty. We are living in a world rife with exploitation: environmentally, economically and socially. The proof of this is increasingly seen all over the world; especially amongst the poorest of the poor, where the chain of exploitation manifests in its most cruel forms. If we really want to find solutions to these problems, we can't help but have a closer look at them on all levels, especially on a personal, human level. Let us understand that our culture of exploitation is the main cause of such calamities, and that a nonexploitive society may be the only solution. Billions of low-wage workers are the modern slaves. May we all together be touched by the truth of their life stories and plant new seeds of justice and compassion within our own hearts… These are their stories, pain and loneliness crafted into words. After serving the poor for a decade Sewa Ashram has developed a deep understanding of the needs of the destitute and effective ways to meet those needs. Today, our approach to care is first and foremost a community-based model. It is in the community that the ill person finds rest and acceptance, often for the first time in their life, while physical and spiritual healing occurs concurrently. Our community is based on compassion and focused on restoring dignity while giving love and good healthcare to the poorest of the poor. All patients admitted to Sewa Ashram contribute to the daily life of the community by helping to care for each other. Many of our staff and workers are former patients who have chosen to remain at Sewa Ashram and serve the destitute. 1 Ton Snellaert Founder, Sewa Ashram Northern suburb of Delhi where Sewa Ashram is located 6 7 RAJU DAS Raju hails from West Bengal. His parents died while he was still a baby. Brought up by his cousin, he worked in the fields as a bonded labourer. He dreamt of going to school, but poverty and his abusive cousin did not allow him. For 24 long and painful years he remained in his village in West Bengal, slaved away for someone else, was fed meagre meals, and never knew love. Then someone brought him to Mumbai, saying the clouds there were lined with silver, the pastures green. However, for Raju, the air in Mumbai was poison. Coughing, he ended up washing dishes at some road-side “hotel” He earned . enough rupees to escape his hard life for a few hours by going to a Bollywood movie, chewing tobacco to ease the hunger inside. After five years of hunger and loneliness, Mumbai's many railway stations beckoned him to find luck elsewhere. He jumped the train heading for Delhi, Capital City of India.When the train arrived and the people disembarked, his diminutive body was dragged along with the crowd until outside the station. After his eyes got used to the light he saw others like him, dark, small, skinny and poor. They became his friends, his colleagues. He joined the thousands of rickshaw 2 drivers who risk their lives amidst the insane Delhi traffic, pulling the weight of a larger specimen of humankind with exertion of muscles and lungs, breathing in carcinogenic fumes. Then there were the men who asked to be driven to GB Road, Delhi's notorious Red Light district. He would watch how these men, drunken and boisterous, climbed the stairs to those women who waved at him from the balcony above, flashing eyes, flowers in their hair, lips carmine red. He waited until it was dark, then he himself climbed the stairs. Many times after, he climbed those same stairs, unaware of the danger that lurked above. He had never even heard of HIV, AIDS, STD, TB, and certainly not how and why to use condoms. Gradually he became more impoverished, a pain in his lungs he could not define, his breath short, grasping fear overtook him. His last strength left him and his home became the pavement in front of Novelty Cinema. No more Bollywood for him. Reduced to holding up his hands for some coins he wasted away while no one cared. On Tuesdays and Saturdays, he would drag himself to the Hanuman temple in Yamuna Bazaar, Old Delhi, to join the queue of beggars and other poor people who lined up for the free food handed out to them. It is here that I found him, emaciated and seriously ill. Diagnosis:TB and HIV infection. After seven months of rehabilitation, Raju chose to return to West Bengal. His physical condition was satisfactory, the healing of his TB infection successful. Although he started on a life-long course of ARV drugs, he returned two months later suffering from breathlessness, loss of weight and skin-infections mainly behind his ears, HIV related. Raju did not know yet how to care for his health. Our challenge lay in guiding patients to live a positive life. The harshness of the system, the exploitation by his superiors, the merciless abuse and the rejection of being a small, black, poor man; one you would not even touch - has left a deep imprint upon Raju's heart. He feels he is not worthy of God's grace, he thinks it is his karma to have a dog's life, guilt stands in the way of total healing. It will take at least two more years for Raju to find healing of heart and freedom within. Our community offers him the healing environment, a family to belong to. Background / Root Causes Premature death of parents resulted in total lack of parental care l l Child abuse and child labour l No education l Earlier worked in Mumbai road side hotel 2 l l l Move back to Delhi to find better work opportunity, worked as a rickshaw puller Exposed to harmful toxins during work which compromised pulmonary health and increased susceptibility to TB Visited red light areas at G.B.Road Delhi Experience l Easy, cheap access to sex workers l Lack of awareness regarding HIV or safe sex l Access to healthcare inhibited by unfamiliarity with city, cost and ignorance of illness Ashram Intervention l Finds acceptance and love at Sewa Ashram l Provided with education, counselling and support l Provided ARV Drugs and TB treatment l Able to learn from others with similar backgrounds l Medical care, good nutrition, safety l Physical condition satisfactory after seven months of rehabilitation. l Re-admitted to the Ashram after two months due to difficulty in breathing, loss of weight and skin-infections Medical Summary l Age: 30 l HIV Transmission Route: Unprotected sex with sex workers. l Diagnosis: Pulmonary TB with HIV, emaciation (30 kg), dermal mycosis. l Prognosis: Mixed. CD4 counts below critical level of 150, ART started November 2006. Psychological instability requires continuous support. Drivers of the three-wheeled bicycles used for carrying passengers and goods in Delhi 8 9 JAVED Javed was born in a predominantly Muslim village in West Bengal thirty-three years ago. His family-home was a hovel made of mud and grass. His father left his family and married another woman when Javed was only three months old. His mother remarried as well and left Javed in the care of his grandmother.Together they lived in the same cluster of huts. Javed, a small boy with a very dark complexion, seldom wearing pants and always hungry, depended on his grandmother to feed and clothe him. Small as he was, he ventured out in the fields beyond the village. Driven by hunger, he would steal at any given opportunity until it became a habit. Complaints reached the ears of his grandmother who would scold and beat little Javed. When he was eight years old he 'escaped' poverty like so many thousands of young boys before him. On the platform of the railway station, he spread out an old newspaper on which he lay down, hungry and tired. In the morning he was woken by the clamor of the trains. Through the open doors of the coaches cleaners swept waste on to the platform.“Breakfast,” Javed thought and he would jump into the waste searching for something to eat. There was a profusion of leftovers. He ate so much, it made him sick. Until the age of thirteen, he would jump the trains, sweeping the floors with a grass broom, holding up his hand for a coin and taking the leftovers from under the benches. Then he fell in with the wrong people, boys older than him who took him to Mumbai. In this metropolis he made his money with petty crimes, ended up in jail several times and was introduced to heroin and professional sex workers. When the mafia approached him offering a career, he escaped to Delhi, the city with no heart. A misguided boy who has never had an education and has known only poverty, hunger and crime won't survive in this city for long without getting into trouble. Soon others instructed him in the ways of injecting drugs with a syringe. Some of the IDUs introduced him to various organisations which provided free syringes and substitute drugs under the needle exchange program and substitution therapy. However, he was not taught how to inject and why one should not share syringes. HIV, AIDS and TB are just strange-sounding terms for one who is illiterate. For five years, Javed lived in the shadow of a flyover. He supported his drug habit by indulging in theft and other petty crimes. Huddled under a blanket with others he poked needles in his groin, in search of the artery in an already infected wound. It was then that I found him, an open abscess above his right leg, TB and HIV infected and seriously ill. He was brought to the emergency room of a private Christian hospital where he was in a coma for eight days. After Javed was discharged from the hospital he came to Sewa Ashram for rehabilitation. Several times he ran away, lured back to the underworld of drug use. Each time he was found in a critical condition and brought back to Sewa Ashram. During the seven years, he has lived in our community he has learned to understand what HIV really means. For an illiterate person it takes often a couple of years, and continual reinforcement before they truly understand the implications of being HIV positive and how to live with the disease. Javed is now a talented painter. He recently married Jyoti, who is also HIV infected, and leads a happy family life.They have adopted his wife's fourteen year old niece. Javed is able to provide for his little family by selling his art. He has had exhibitions of his paintings in Europe and India. He finally“made it.” Background / Root Causes l Born in poverty l No parental support, brought up by grandmother l Undernourished while growing up l Illiterate l Had a habit of stealing l Escaped rural poverty by migrating to Mumbai l Hunger led to criminal conduct which resulted in imprisonment Delhi Experience l Expose to heroin and professional sex workers l Needle exchange program supported his drug addiction. No safe injection education l HIV transmission prevention / safe sex messages did not reach him l Developed a severe abscess Ashram Intervention l TB treatment and rehabilitation l Abscess care provided l HIV testing and counselling about living with HIV l Long-term community environment: Javed has been living in the Ashram for 7 years l Encouraged to discover hidden talent of painting, leading to economic independence Medical Summary l Age: 33 l HIV Transmission Route: Injecting drug use with shared needles / Unprotected sex with sex workers l Diagnosis:TB, HIV l Prognosis: Stable, while his CD4 count remains above critical level of 200 per cc. 10 11 JYOTI Jyoti, dark beauty, 25 years of age. Hers was not an easy childhood; born in poor conditions, her home was one of the many mud huts dotting the barren landscape of Andhra Pradesh. Her mother was severely mentally ill, she roamed around, wailing like a mad woman, her hair dreaded, dust and thistles in it. Jyoti perceived her as a stranger, not her mother at all, no affection was to be found in her arms. Her screams frightened Jyoti. Her father was mostly absent, trying to provide for his family, bonded to his labour, a continuous cycle of paying debts with sweat and blood. When Jyoti became a teenager, she became easy prey to the boys around her, her father had died then and her mother was unable to protect and guide her. When she was sixteen years old, one young man in particular impressed her with his worldliness; he could read and write, count numbers and would wear a clean shirt all the time. He proposed that they should go and live in Delhi where he had secured a job with the railway as a technician. Leaving her mad mother behind, they travelled by train to Delhi and made their residence in a small house at a railway colony. Her boyfriend, husband in the eyes of others, was out on duty rather often. She would not see him for days on end. He would suddenly appear, drunk and violent, abusing her, and then run off again. In the night she lay awake, a burning fever consumed her body, and a persistent coughing made her spit out blood. Jyoti dragged herself to a doctor who wrote out some medicines, no examinations were done, no counselling given. As her condition worsened, she became useless to her man who abandoned her in another bout of anger. Rejected by family and friends, she was about to be rejected by society at large. Different doctors exploited her weakness; she sold her rings, then her necklace, her earrings, even the tiny nose ring to buy medicines, but to no avail. Nobody really cared; her tuberculosis infection and HIV status was kept hidden from her, her sickness filled the pockets of the false healers. It was only in a government hospital that she was rightly diagnosed and referred to an AIDS Care Centre run by a Delhi-based NGO. How biased our society is; never mind the man who was with multiple partners and infected her with HIV, we point the finger at the woman. Her HIV status also gave her the status of a prostitute, or sex-worker, as we say so decently. This is the way she was received in this AIDS Care home, this is the way her history was penned down in the register and as such she was introduced to us. After only 3 weeks in this AIDS Care Centre, Jyoti was referred to Sewa Ashram since she was a destitute, rather dark and …well, a prostitute. Her condition was serious, a CD4 count of only 17, her lungs congested, her body tired. A course of anti-tuberculosis therapy was started in combination with ARV drugs. She slept a lot during the initial months; the usual symptoms of HIV plagued her: ulcers in her mouth, diarrhoea, weight loss. However, it was the acceptance she experienced in Sewa Ashram's community that brought her deep healing. Jyoti came out of her shell, overcoming rejection by accepting the task of caring for the Ashram's children, many of them orphaned and disabled. She felt the “mother” inside her heart rise, ready to love. Javed, our raven black painter courted her beauty. His paintings spoke like- wise, a celebration of female forms, spiritual, involving the heart. They married in early 2007 in the midst of our community. The young couple adopted a girl; an abandoned niece of Jyoti. Today, they live in a rented apartment nearby and recently invited me for dinner.The smell that lingers in the kitchen is delicious, many paintings on the wall, colourful curtains, simple furniture. On an easel rests a big canvas, a painting by them both, still in progress; the story of their lives. Background / Root Causes l Born in rural poverty l Mentally ill mother l Absent Father caught in a cycle of debt and labour l As a young, vulnerable girl, she was taken advantage of by boys l Education about HIV/AIDS or safe sex did not reach her Delhi Experience l Infected with HIV by an unfaithful partner l Medication prescribed without examination or counseling l Illness exploited by doctors l Discrimination based on HIV status l TB and HIV status kept hidden Ashram Intervention l TB diagnosed and treatment started, completed in May 2007 l Consistent health care provided in a peaceful environment along with love and acceptance in the community l Able to find purpose in caring for others l Finds a life partner in the Ashram l Involved in jewellery making Medical Summary l Age: 25 l HIV Transmission Route: Sexual transmission l Diagnosis: HIV with very low CD4 count and pulmonary TB l Prognosis: Stable, compliant with ART and CD4 remains stable though prone to opportunistic infections of the respiratory system and GI tract. 12 13 SHAMBU Shambu is his name; a good looking young man 26 years of age. His face aquiline, mysterious, his voice soft, silent most of the time. I have always wondered how this well brought up kid ended up like he did. Although his family was traditionally farmers, his father served as a soldier at Nepal's high altitude borders. His was a normal childhood in village-life Nepal: going to school, playing with his elder brother, out for a walk with his sister. It was a good life, according to Shambu. However, as a teenager he became acquainted with sickness when his mother was infected by tuberculosis in the brain. His father, who was rather old, had died a few years before and his elder brother and sister had left the family-home, both being married and having kids on their own. As not much help came from their side, Shambu decided to travel to Delhi where his sister was living. Maybe he would find a job, maybe he could support his mother who battled for her health alone.This was eight years ago. Delhi is a dangerous place for a young man, a migrant seeking to make some money. A job as a dishwasher by a “tent-house” was disconcerting, cleaning the plates while eating the leftovers from the well-to-do. He moved to Yamuna Bazaar, rented a rickshaw and fell in with the “wrong lot”something almost unavoidable in , this particular area. Delhi's migrant rickshaw drivers have their own anarchistic sub-culture; you carry a load when in need of money, when thirsty for alcohol, when desiring a woman, or drugs to ease your sleep. The hot hours of the day you wile away under the shade of a tree, the seat placed crosswise on the handle-bars for a bed.You did not need more. Freedom! Then Shambu began his down-fall; he was introduced to the syringe. Delhi's addict population is hooked on a cocktail of various drugs, painkillers and tranquilizers to be obtained without prescription at pharmacies, which are then injected in the groin or arms. During this period none of the awareness programs undertaken by the Government or NGO's reached him. Instead, syringes and substitute drugs were freely given out by a number of NGOs under the needle exchange program and the substitution therapy without bothering to counsel him or his peers about the dangers of injecting drug use. After some years of injecting drug use, rickshaw pulling and additional stealing, an enormous abscess appeared in his left groin. It was then that we found Shambu and admitted him in a semi-private hospital of good reputation. For many months Shambu was in isolation, the flow of pus hard to contain. They had never encountered such a difficult case before. When HIV was diagnosed, a sign was hung on his door; it was the black icon of “Biohazard” Doctors and nurses would enter his little room less regularly. I still see it before me; . the emaciated boy, left alone, lying in his own waste and pus, with a warning sign on his door. After a lengthy treatment he was discharged and brought back to the Ashram, disabled, his left leg rendered useless. Shambu also had TB. At the Ashram the real healing process began. The healing of his broken heart: the shame, the regret, the enormous feelings of guilt, the battle with the craving for drugs, for escape out of a reality he could no longer understand. After a rehabilitation of 4 years Shambu was deemed fit to return to Nepal. He desired to see his mother again. With his sister who still lived in Delhi, he returned to his parent's house. How surprised I was to see him almost a year later entering the Ashram. As emaciated as before, his right leg swollen, his other leg dangling along. Something dark, unspoken, had made him return to the bridge, to his former life-style. He abused his healthy right groin at an injecting site until his leg became swollen beyond proportions. After admittance in an AIDS Care Home he was diagnosed with TB for the second time.That was when he decided to return to the Ashram. The way he was received, the acceptance he has experienced, the care given by his brothers while daily dressing his wounds, have all mended his broken heart. His wound still 14 causes many problems; the bones of his pelvis are infected. He is being treated for TB. He realizes that in the condition he is in, there is at present no other way for him than to live in community at Sewa Ashram. He serves in some domestic chores and designs and creates his own jewellery everyday. He still is silent, good looking and soft spoken. He folds his hands and gives me a greeting of love. Background / Root Causes l Burden of family responsibility at an early age due to ailing mother, deceased father l No support from sibling l Low level of education l Child labour Delhi Experience l Migrated to Delhi in search of a job l Driven to petty crime l No education about HIV/ risks associated with syringe use and unprotected sex l Government awareness campaigns and health initiatives did not reach him l Quality healthcare provided until HIV status known l Faced discrimination based on HIV status l Half-hearted approach by NGOs involved in the needle exchange program, no counseling given against drug abuse, no safe injection education l Developed a chronic Abscess and TB Ashram Intervention l Hospitalization for critical condition with long-term rehabilitation l Finds acceptance and love l Provided with education and counseling l Left the Ashram to return to native home but returned after a year on being diagnose TB for the second time l Able to learn from others from similar backgrounds l Given an opportunity for creative outlet in jewellery making Medical Summary l Age: 26 l HIV Transmission Route: Injecting drug use / Unprotected sex with sex workers l Diagnosis: Originally presented with Inguinal Abscess and HIV. HIV with TB of the Pelvic Bone with draining sinus. l Prognosis: Reserved. Tubercular sinus has to be removed by amputation. On ART, CD4 counts stable, but struggles with ART compliance. Long-term TB treatment required. 15 DINESH Dinesh parked his cycle rickshaw3 in the shadow of a tree. He had no strength left, no breath. For more than five months, he had been coughing up blood. His lungs seemed to be filled with water. Appetite had left him long ago, no need for food. Dinesh placed the seat of his rickshaw so that he could sleep on it and then closed his eyes. He had nearly dozed off when a sudden jolt threw him from his seat. Lying on the ground he saw that a car had hit his rickshaw, both wheels were smashed, the axle broken. A violent pain seared through his hips and legs, he was unable to crawl up and thus decided that it was better to just lie down at the spot, better to just die, give it all up. It was then that we found him, this emaciated boy, 18 years old. After a bath and a haircut at the Ashram we did some medical investigations and found out that he was suffering from TB, pleural infusion and a broken hip. The day after, he was admitted in the Intensive Care Unit of St. Stephen's hospital where five litres of pus were drained from his lungs. At that time further surgery was required but Dinesh was too weak to undergo such a serious medical procedure. After one and a half months with no improvement he was discharged from the hospital and came back to the Ashram in order to gain weight. He only weighed 35 kg. I remember how scared he was when he arrived; he earnestly feared for his life, there was no improvement in his health yet. But love is a powerful medicine; we pampered Dinesh like a baby, tempted him with chocolate and fruitjuice, fried eggs and chicken. Eight months later Dinesh had gained 20 kilos. We sat under the tree, his hands ever nimble, creating earrings, necklaces and bracelets. He told me his sad story, with a smile nevertheless. Dinesh was born in Bihar, northern part of India.When he was two months old his mother died. His father was an alcoholic who would beat him and his brother mercilessly. When his father married again he left his two small sons with their grandmother, who was living in a slum-hut. Dinesh was brought up in poverty, there was never enough to eat and no opportunity for education. His elder brother left Bihar and never returned. When Dinesh was seven years old his grandmother was killed by her own son; Dinesh's uncle hit her on the back of her head with an enormous pestle and took possession of her hut. Hearing the news, his father took Dinesh back to his home. Things didn't improve. His father was drunk most of the time, his step-mother abused Dinesh, making him work from morning till evening, not allowing him to go to school. When he was ten years of age he left the violence of his home. His friends had told him about the wealth to be found in Delhi.“Everyone owns a house and drives a car,” they said. So Dinesh climbed on the train to Delhi. Arriving in Delhi he found a job at a tea-stall, cleaning plates and cups. Carrying out various petty jobs over a period of two years he remained in poverty, because no one ever paid him for his labour. Little black Bihari boys just don't get paid, they get booted out. Desperate to succeed he travelled to Punjab where he worked for seven months at a farm until he was booted out there too, of course without payment. He tried his luck in Mumbai, decided to be his own boss and took to gathering garbage, selling it to Mumbai's vast recycling industry. After one year of scavenging, he managed to save 4000 rupees 4 and once again travelled without a ticket to Delhi once more.“Good to be back in the Delhi” he thought while taking in the vast feverish crowds in front of Old Delhi station. Money burning in his pocket, a hollow feeling within, he dove into the cobweb that is Old Delhi. 4000 rupees was burned up quickly and soon he felt the soaring hunger again. While standing in a queue before Hanuman Mandir 5 to receive food handed out by middleclass devotees, a policeman approached him and offered a job in some sort of illegal parking racket he operated. Dinesh, a parking guard, 3 4 5 bamboo stick in his hand, shooed the little dirty urchins away from the shiny white sedans. In the night fever consumed his body, violent coughing kept him awake. In the morning he felt no strength to rise from his cot. The policeman chased him away like any other mangy dog; there are plenty of healthier Bihari boys to exploit. Pedalling his rickshaw, Dinesh felt that the end of his life was near. He sought help at the dispensary of a local Sikh temple, but dispensing is all they did: a few paracetamol tablets and some cough-syrup. Social workers visiting the hotspots of the homeless in a fancy mobile clinic, hand out the same; some paracetamol, some syrup.“You will be ok.” they say.“Soon you will be able to eat.” However Dinesh's appetite did not return. With his last strength he cycled to a huge government hospital, where, alas, he is given the same 'non-treatment'; some painkillers and a “Get out of here!” It was then that he returned to the shade of his tree, having never felt so lonely in his life. He placed the seat crosswise on the handlebars and rested. Everything seemed to turn before his eyes, the sun was relentless, a big ball of fire, then darkness. It was then that we found him. Diagnosis: broken hip (related to bone TB), Pulmonary Koch's and pleural infusion. Background / Root Causes l Born in poverty and undernourished l Child abuse by alcoholic father and step mother l Illiterate l Child labour Delhi Experience l Ran away to the city for a job l Exploited at work l Inaccessible and ineffective healthcare interventions 3 providers dispensed medicine without tests or diagnosis l Discouraged from seeking treatment, discriminated against and shouted at because he was poor l Late diagnosis resulted in advanced TB with complications Ashram Intervention l Found at the neediest moment; provided with medical treatment, good nutrition, care and love l Slowly health returns, and he takes up jewellery making l Orthopaedic injury treated l Timely intervention saved one lung Medical Summary l Age: 18 l HIV Status: Negative l Diagnosis: Pulmonary TB with pyothorax, later diagnosed with TB of the hip joint, extreme emaciation l Prognosis: Good, as long as recurrent infections do not occur. One lung is constricted due to fibrosis, lung function is 50%. Daily exercise can improve lung function up to 65%. Three-wheeled tricycles used to carry passengers and cargo in Delhi Approximately $ 100 USD A well-known Hindu temple in Delhi 16 17 DHARAM SINGH Dharam Singh, such a cute boy, endowed with a bright mind, strong body, nothing could go amiss it seemed. His family, not poor, not rich, are embroiderers in the suburbs near Aurangabad, Maharashtra. They also have a little side business in transport that adds to the family fortune. At school he felt the strong need to assert himself and therefore spoke in a loud voice. He thought he was always right. One of the few things small boys learn in school is gambling. Their faces in brazen contortions as the cards are slammed on the floor, small boys eager to grow up. Above his bed hung a picture of muscular Salman Khan from the hit movie “Tere Naam.” Dharam looks in the mirror and decides he has become a man. A local money lender provided him with 8000 rupees. Today he will win; today he will rake the money in. But the money lender and some others went along to a place in the jungle for some undisturbed card play. An hour later Dharam Singh is robbed by the cunning elders, the money lender wants his money back to add to his winnings and even threatened to harass his parents. 6 doctor demands an x-ray to be taken, after examination of the photo he gives 14 small white tablets to be taken morning and evening for one week. Seven days later, I scanned the Yamuna Bazaar roadside; the sight of that skinny boy struck me, so I take Dharam Singh home to the Ashram. An x-ray revealed pulmonary Koch's (TB), rather serious, sputum positive. He had never heard about tuberculosis, a mysterious word, he turns it around in his mouth: tu-bercu-lo-sis. We explain the importance of continuing the treatment; I implore him to not run away. Over four months, I see him regaining his health, he is boisterous once more. One day, while distributing the morning medicine, Dharam Singh was absent. A boy told me that Dharam had shown him 50 rupees before jumping in a bus to Delhi.That same day and many times after, I went looking for him at Yamuna Bazaar, under the ISBT Bridge, on the Yamuna riverbank, though I found no trace of Dharam Singh. Four months later, I again scan the lines of beggars in front of Hanuman Mandir. At the end of the queue of ragged people a half naked boy was squatting on the pavement, watery diarrhoea beneath him. I saw the dark brown mark, a sort of beauty-spot on his nose. “Dharam Singh,” I gasp and lift him up. Diagnosis: “Pulmonary Koch's, Defaulter, left pyopneumothorax with bronchopleural fistula on ICD, sputum positive.” His lung had collapsed, negative suction pressure was applied, he was in the ICU for two weeks. Two months later we both look at his most recent x-ray,“Do you see,” I say,“How slowly tissue builds up and the lung takes on its former shape? Maybe next month we can remove the tube. Please stay, don't run away, it will kill you.” He looks at me and grins! Background / Root Causes l Ran away to city to escape gambling debt Delhi Experience l Three attempts to access health care were ineffective. Once he escaped l Default on TB treatment l Lung could have been saved with earlier treatment. When he defaulted on treatment, it cost him his lung Ashram Intervention l Immediate identification of TB l Defaulter of TB treatment is continually sought, welcomed back to Ashram when found l Continual reinforcement of the importance of completing treatment l Trust built by counselling Medical Summary l Age: 17 l HIV status: negative l Diagnosis: Pulmonary Koch's, Defaulter, left pyopneumothorax with bronchopleural fistula on ICD, sputum positive l Prognosis: Bad. Will survive with one lung unless he gets another infection. Needs to remain in clean and friendly environment. Unable to do heavy labour. Remaining lung is compensating for lost lung. Pulmonary rehabilitation exercises essential. Dharam Singh never went back home that day, or ever after. The train was waiting for him, the doors open wide,“Old Delhi” written on a sign. In front of the Old Delhi station a Sadhu 7points the way to Yamuna Bazaar, his right hand making one single fluttering movement, indicating 'straight on!' The grapevine has it that money is to be earned in the catering business, Indian weddings in abundance. He made 1,500 rupees8 a month he made, not bad for a single boy. He spent it on movies, food, a girl sometimes and of course, gambling. Heat descended, dust-storms ran amok. Dharam took the train to Mumbai, pulled in nets on a fishing boat, cleansed utensils in ocean-front hotels. He made 150 rupees a day. Money was important to him. In search for more he travelled to Gujarat and worked in the kitchen of a huge Jain community, where the food tasted sweet though he found no nourishment. In the night, cold then hot fevers would keep him awake, he felt sick, but no one cared. He felt alone. One more time he counted his money, it was enough to travel to Mumbai once more. Spilling out of Queens Gate station he took a rickshaw to the JJ Hospital, he felt so miserable. At the hospital, nurses immediately hooked him up to IV's and took various blood-samples for tests. When he was lying on a stretcher ready to be brought to the X-ray room, he removed the IV's and bolted out of the door. Out of breath, a searing pain in his chest, he stumbled into Queens Gate station. The train to Delhi would arrive in about eight hours so he sat down between the crush of waiting passengers, unable to find rest. After a torturous journey of 24 hours he arrived in Delhi where he made his way to the nearby Lok Nayak Government Hospital. He entered the emergency, two patients on one bed. A panel of doctors decided not to hear him, "OPD!" someone shouts. He joins a queue of some hundred patients, but his number was not called on that day.That night he slept before the entrance, at seven in the morning he finally sat down on the last empty seat in front of the doctor's room. The doctor, hardly looking at Dharam Singh, jots down some notes:“persistent cough, loss of appetite, fever and congestion.” His watch tells him the date and then he signs the document and throws it on the pile before him and writes a prescription for cough syrup. Job done, next one. The syrup tasted nice, though his cough and fever remained. At Yamuna Bazaar he goes to an NGO that provides medical care to the local community of drug-addicts. Here the same procedure is followed; cough syrup is given. Next one! The Gurudwara9 might bring healing, so he headed for Chandni Chowk.10 The Sikh About $ 200 USD A Hindu ascetic holy man 8 Approximately $ 45 USD 6 7 9 10 Sikh Temple A major market in Old Delhi 18 19 RAVI The year was 1975; the place was the rural belt surrounding the smoke of Calcutta, long before Special Economic Zone's, when farmers still had their own land. The harvest was plentiful, the Howrah River flowed smoothly and everything seemed all right. People on the land were poor but didn't go hungry, unlike the starvation among the destitute in the city of Calcutta, now Kolkata. Why then, did eight year old Ravi leave his parental home? I guess he was just too young to comprehend his actions. He just wandered off along the railway track to the nearest station, leaving his parents, brothers and sisters behind. The diminutive boy ducked behind a pillar when the train, a red god-like monster, screeched to a halt at platform number one. The compartment doors slammed open and people spilled out. He was almost crushed between bustling coolies, before quickly slipping on board. As he was small enough to hide under a seat, he thought that he did not require a ticket. Whistles blew, a loud shutting of doors, there was a clashing and shaking of steel, wheels moved in unison, like a beating heart, ever faster, the rhythmic beat swaying Ravi asleep. On arriving in Delhi, the fearful and lonely boy was quickly measured by the cunning eyes of a tea-stall owner. Ravi was allowed to sleep under the table at night, at daytime, in scorching sun, he scrubbed plates, pumped the kerosene stove, served boiling hot chai and did a thousand other errands. His payment was food and a mat under the table, affection and love was nonexistent. Treated gruffly and demeaned, he more often received a kick than a cuddle. It was again a train that brought him to the outskirts of Delhi, it reminded him of home; green fields, the season of harvest. A small boy, bent-over back, tilled unyielding stone-like soil. Seasons change, the monsoon washed away any opportunity to work/eat. Back in the city, under Delhi's flyovers, the homeless wile away their time. Charas and ganja11 is passed around until another season arrives; the season of weddings and festivals. “Party Lawns” and “Tent Houses” do brisk business, catering to the vanity and Bollywood fantasies of the well to do. Elaborate banquets are laid out; the greater the number of guests, the more auspicious the status of the family. Ravi worked so hard, became too tired to even eat, no moment's rest was given. It was then that a friendly gloved hand, a police man in uniform, brought Ravi to a government run children's ashram in Alipur. An enormous steel gate closed shut with a loud bang. Is this jail? The government social workers, however, were kind. Education was given, the environment was safe. Ravi felt it was a bit like holiday. For 4 years, Ravi was locked up, then at the age of 16 he was released, with nowhere to go. He picked up a multitude of jobs; cleaning dishes, driving a rickshaw, like nothing ever changed. But he was a young man now and there was a certain urge. GB Road was the address to be, everyone could point the way. Big greasy turbaned guys sell motor parts downstairs, then up the rickety stairs to enter a room full of girls; old, young and very young. He chose one, the next night another, this was fun. Tent-house jobs kept the cash coming, when the season changed he traveled south. Bombay, Bollywood. He tasted the girls of Bombay, much the same as in Delhi, though these girls insisted that he used a rubber thing, a sort of glove. Delhi girls didn't do so. He never had seen or even heard of such a thing. The girl assured him that it was to prevent getting babies, many families use it, she said. Back in Delhi again things were much the same, that night's girl had no condoms. Doesn't matter, he bought her with 250 rupees12 for a full night. In the morning he slipped another note of 50 on her pillow, she was nice. The new millennium is upon us, it is the year 2000. It is August and the sun almost knocks Ravi out. He still does not know he is HIV infected, he has never heard of HIV.The connection between condom usage and HIV is beyond his understanding. He has lost much weight these last months; he has also lost his interest in 11 women. Staying alive takes up all his time; with his business of selling little mirrors, combs and pens before the towering Jama Masjid13. Six years later he ends up at Mother Teresa's House of the Dying Destitute in Delhi. It is there that TB and HIV are diagnosed. DOTS treatment is given for seven months and after a sputum test comes back negative, he is discharged. Further clinical examinations and follow-up might have prevented a relapse of secondary infections that almost killed him a second time. Some chai-wallah14 in Chandni Chowk gave him our address, then pointed at the bus-stop by the Red Fort. Ravi in need of bed rest, medical treatment and good food follows the chai-walla's advice and climbs the bus headed to Narela15. A destitute person needs more then a shelter in the night, a treatment for some months; a homeless person needs a community. Four months have passed. Ravi health is largely restored. It surprised me to see how quickly he gained weight. I must say though, that he is very lazy! He does not move around a lot and avoids taking up any chores to be done at the Ashram. This poses a challenge; how to motivate those that are not willing to be motivated, who have never learned that life is more than food and sleep, who depend on drugs for experiences of transcendence, who do not seek but only hide. This aspect of Ravi's rehabilitation is as important as the clinical/medical aspect, a transformation needs to be wrought within. Without this he will soon be in the same position as before. It is eleven in the morning, I stand next to his bed; “Ravi, wake up,” I shout. Background / Root Causes l 8 year old runaway seeking adventure l Child labour Delhi Experience l 4 years in a children's ashram provided with education, care and safety, but discharged without further plan l Exploitation in work l Begins to visit prostitutes without understanding about use of condoms or HIV l Diagnosed with TB and HIV infection l DOTS treatment given following standard protocol, but relapse occurred Ashram Intervention l HIV and TB treatment and rehabilitation l Medical care, good nutrition and a loving environment are provided Medical Summary l Age: 38 l HIV Transmission Route: unprotected sex with sex workers l Diagnosis: HIV with Pulmonary TB l Prognosis: Reserved. Physically improved but unmotivated to take further steps to maintain his health independently Marijuana and hashish Approximately $6 USD 13 The Principle Mosque in Old Delhi 12 14 15 Tea vendor Sewa Ashram is located in the north Delhi suburb of Narela 20 21 SANTOSH Most stories in this book depict the life of those who had limited choices, due to extreme poverty. Santosh however, had everything he could wish for. His family was not rich but had a certain standing, and was respected in the village, a family of hardworking farmers who also ran a sweet-shop. As a child he was mesmerized by the display of sweets; creamy white with silver leaf on top, or brown round balls oozing liquid sugar. Jumping alongside the bullock-cart which brought in the harvest, he never cared much for the industriousness of his father, or his elder brother, nor for his four sisters who certainly would need a dowry very soon. Hanging out with his cousin was what he liked best, shooting pigeons with a catapult, or jumping the train to Patna, the darkness of a cinema, celluloid dreams. Back home he would fight with his elder brother, or fight at school; he seemed to incite violence wherever he went. Waving the wisdom of his father stubbornly away he and his cousin escaped Bihar, as have so many Bihari boys done before them, only to end up in Delhi, cleaning utensils and washing dishes at a roadside dhaba16 or tent-house. How can a young man keep himself from stumbling? There are no role models, or any rules. The only encouragement given was to join the debauchery, to laugh with the fools, to share in their conduct. With no knowledge at all concerning the dangers of sexually transmitted diseases he sought entertainment with the flowered girls of GB Road. A month's wages of 1500 rupees17 did not cover the pleasures to be bought. He turned to the girls walking the streets who offered sex for only 10 rupees. A sad encounter in a park, a few minutes, no condoms, a wilted flower, is this love? And then, he lost his strength, his appetite, and his will to live a meaningless life. The guys at the tea-stall advised him to seek help when he couldn't rise from his cot anymore: “Go to Mother Teresa's.” So they bundled him up in a rickshaw and dropped him before the gate of the“House of the Dying” . The nuns took good care of him, a doctor prescribed ATT and under his supervision, the course of medicine was completed. Seven months later, he left the care of the sisters and started working again while living on the road. With his return to work, Santosh also returned to the vices which were habits of long standing. It is so hard to live a better life, not knowing what is best; no one ever told him. His home for the next two years became the area near the ISBT flyover, straddling the Yamuna riverside, a concrete Moloch in whose darkness the homeless huddle; sorting scraps, abusing substances, hiding from the light. The waters of the Yamuna, swollen by monsoon rains, flood the river banks. Makeshift dhobi ghats18 vanish in her surge. Daily labourers seeking shelter from the lashing rain mingle with other homeless in the wet comfort of the flyover: the rickshaw wallahs, rag-pickers, addicts and beggars. Their beds are blocks of concrete and a blanket to share. Santosh lay alone, no one was willing to share his slab of concrete, violent coughing and spitting of blood kept others at bay. An ex-patient of Sewa Ashram had compassion upon him and brought him by rickshaw, braving the rain, to our community. The homeless are afraid of big Government Hospitals, afraid to even look in the eyes of high caste doctors who will reprimand their ignorance. Its buildings are huge, intimidating, security guards wield their lathis19 at the sight of a person in rags. The destitute wouldn't even think about going to such a place, rather they turn to quacks, a local Gurudwara or an Ashram, anything better then a “sarkari” hospital20; “no commission, no admission” they joke. At our clinic a relapse of tuberculosis was diagnosed, treatment given, and like all patients at Sewa Ashram, an HIV test was performed. The result was positive. Two months later, Santosh is in the best of spirits, does his appointed household chores, joins the pulmonary exercises in the morning and 16 17 evening and attends the educative program given in our community hall. I invite him to sit with me under a tree, in the silent shade he tells me his story, regretting the mistakes he made he searches my eyes for an answer.“It is ok,”I say. Background / Root Causes l Born into a respected family l Runs away to Delhi with his cousin Delhi Experience l Engages in unprotected sex with sex workers l Contracts TB and completed treatment in Mother Teresa Home l Return to old habits after seven months Ashram Intervention l Love, care, daily medication and good nutrition l Prompt diagnosis and long-term rehabilitation Medical Summary l Age: 25 l Diagnosis: HIV with Pulmonary TB l Prognosis: Reserved, as long as complications due to HIV/TB do not develop An open eating place on the side of the road Approximately $40 USD. 10 rupees is approximately $0.25 USD 18 Open-air laundry facility 19 Heavy bamboo or iron stick used as a weapon 20 A government run hospital 22 23 HARI Hari: a bird-like face, scrawny features, a sharp prominent nose, beady alert eyes, forty years old. Someone from Narela sought help for their neighbour and we found him alone in a cramped dirty little room, the stale air was infused with the smell of rotting flesh; the heat was suffocating. At the Ashram we washed him, then put him on the bandage table. His back and buttocks carried open bedsores, pulse slow and temperature low, the X-ray looked alarming. His breath wheezed laboriously through a constricted airway, his tongue was covered by oral ulcers, his voice was almost absent. He was in a bad shape indeed. We decided to admit him to St. Stephen's Hospital. One week later, he returned to Sewa Ashram in the ambulance.“Satisfactory” his discharge papers read.“How to define that?” I muse. We sit together, his papers in my hand: “Diagnosis: immuno-compromised state (retroviral) with pulmonary Koch's.” And “Absolute CD4 154,” I read further then ask him,“Do you know what HIV/AIDS is?” He bites his lip, then murmurs something in Hindi about “Ganda kaam, doing dirty things, by which you get it.” He remembered seeing a billboard on G. B. Road. The big capitals “SEX” he could read but not more. A friend knew some more, “You need a condom, else you become sick.” That was about all these men understood. Now he still didn't know, so I explained as if speaking to a child, slowly, in a language he is able to understand. He nodded his head, still biting his lip. I asked him about his life. “Bihar” he sneers. He turns gloomy as he relives his past. He remembers the dark room he grew up in, the poverty and hunger, the labour he had to perform seven days a week, the constant beatings from his uncle. When he was seven years old his father died of “coughing and fever,” two years later his mother also died.“Tuberculosis,” some doctor said and made her pay for injections over a period of two months, before her death. Every two years a family member would die of TB without receiving proper treatment: his father and mother, then his two brothers. Only he and his younger brother survived. When Hari was ten years old, he himself became sick with “coughing and fever.” Four months of medicine saved his life, though he was too weak to be of use any longer. His abusive uncle, who was eyeing his parent's hut, invited Hari to travel with him to Bombay. When the train passed Delhi and the whistle blew for departure, his uncle pushed him out of the train. When he relates this to me, tears come to his eyes. He bites his lip once more and then is silent for a while. Meanwhile, I reflect on a recent newspaper article with the heading:“Over half of our children abused.” In it are the results of the first National Study on Child Abuse, covering 13 states and a sample size of 12,446 children. The numbers are shocking: 53% of children have faced some kind of abuse: physical, sexual or emotional. The study found that boys were as much at risk as girls. The report itself also mentions childlabour and estimates that there are 110 million child labour in India. It's officially illegal, although present everywhere. Little boys are being exploited and abused. Without little boys, the city of Delhi would grind to a halt. Old Delhi Railway Station, platform number one; Hari, ten years old, scrambled to his feet, wiped the tears from his face and the dust from his clothes, then proceeded to the exit. He had never seen such a big building, never seen so much traffic. He took a deep breath, then merged with the beggars. One morning he woke up with someone pulling his sleeve. A kind rotund man with an expensive watch offered him a job and promised to pay Hari forty rupees a month. For fifteen years, Hari worked in a sweet shop in Narela, seven days a week from early morning till late at night. His bed was a mat in the corner. 24 He was a young man now, who has a skill. Because he never made a penny and the bus to Delhi stopped in front of the shop, Hari climbed on it, to seek a better job. For the next ten years he worked as a sweet maker in bustling Old Delhi, finding entertainment in cinemas and, of course, the brothels of G. B. Road. It was only a few years ago that he saw that billboard, the first time he heard about condoms. The girls never insisted and ignorance was bliss. Now he is a broken man, old beyond his years. I assure him that he will become strong and fat once more.“I was never fat,”he replies,“I'm skinny but strong” . Background / Root Causes l Born in poverty, harsh living conditions, malnourishment l Ailing Mother exploited by unscrupulous health providers without providing proper treatment l Parents and two brothers subsequently died of TB l Child abuse and child labour l Illiterate: no educational opportunity l Effective healthcare inaccessible to parents, though his childhood TB is treated Delhi Experience l Abandoned in Delhi by uncle l No awareness of HIV/AIDS when first visiting sex workers l Too late for prevention of HIV transmission and early detection of TB Ashram Intervention l Free medical care, hospitalisation l TB treatment including daily medication, nutritious food, and restful environment within a community Medical Summary l Age: 40 l HIV Transmission Route: unprotected sex with sex workers. l Diagnosis upon arrival at Ashram: HIV and re-infection of TB l Prognosis: Fair. Both his lungs have been more than 50% damaged by TB. He is also HIV positive with a low CD4 count. ARV has to be initiated 25 SHYAM Shyam peeked through a slit in the door into the dark room where his father was sitting among other men playing cards at high stakes. The room was dense with tobacco smoke, a roaring of voices and the breaking of bottles. Trembling he stood there, anticipating how his father would return in the night. He would probably smash a few pieces of furniture before turning his anger on him and his brothers. Once more Shyam peeked through the door and saw his father intensifying the stakes with much bravado. A chillum with hashish21 passed along, another bottle opened. Then Shyam turned away, disgusted with those men, hating his father for the example he has been. His father's alcohol and gambling addiction has ruined this family of poor farmers. His younger brothers are already following in the same footsteps, smoking dope and committing petty crimes. His mother's face wrinkled beyond her age she was worn out by the cycle of sorrows and the abuse of her husband. The shelves in her kitchen were empty, outside the land was barren. In the night Shyam wrapped some clothes in a bundle and left his parental home descending the alcohol steeped mountain of Uttarakhand. Little boys, fourteen years of age, find jobs easily as they are in high demand by tea-stall owners, roadside restaurants, or any adult person who needs a hand; no need to pay the little ones. He learned the tricks of survival in the big city. Shyam bought a tea-kettle and served hot chai in train compartments along with bidis22, tobacco and matches which he carried in a box slung on his shoulders. He saved the money that he earned for a better future, somehow. In the darkness of the railway station he would meet the fleeting glances of women with seductive eye, accentuated by black kohl.“Only ten rupees,” ruby red lips whisper. Love comes cheap at railway stations, minor girls or boys up for grabs. Under billboards proclaiming safe sex, the illicit flesh trade thrives, killing the innocents who have no comprehension of virus or bacteria, mere children who never learned to read or write, doomed from the beginning. Shyam is just one of them. Four years later, big enough to drive a rickshaw, he teamed up with the guys of Yamuna Bazaar. In the shadow of a bridge their vehicles were parked, huddled in groups. Under the cover of a blanket, they inhaled heroin. The magic of brown powder turning into a blackish liquid and inhaling the serpent-like wisp of smoke, a rushing of the blood, a state of utter tranquillity; back in the womb. Reality calls. Woken up by hunger he cycles to Old Delhi station. First he has to find a paid load to carry on his rickshaw and then have breakfast. He day-dreamt about a normal life; a house, wife and kids, then his thoughts go to his mother; would she still be alive? He longed to see her after these many years and prepared to travel home. On arrival he was shocked by the sight of his mother, she seemed to have shrunk. Bent over by sorrow she kisses his hands. Father died the way he had lived, drunk and abusive, his liver turned into a stone. His brothers? God knows. Evil rumours abound; thieves, gamblers, drunks. He promises his mother to be a better son, to marry and provide for her, to give her grandchildren, give her a better life. In the year 2000 he brings a bride to his mother's home. Both families agree, the knot is tied and the couple circle the sacred fire, man and wife till death does them part. Nine months later the first child was born, then another one. It never became the model-family Shyam envisioned, his young wife was stubborn and difficult, he himself was increasingly addicted to heroin. Then sickness fell upon him; pulmonary tuberculosis and HIV infection was diagnosed and he was admitted to a government TB hospital for 5 months. His wife and children were tested for HIV, their result was negative. But another test would be required for his wife, at the end of the incubation period. His woman however had made up her mind; a last time she visited him in the hospital, to announce that she would leave him.When he 21 inquired about his children she bluntly told him that they were dead. She packed her things and disappeared to Bengal, Shyam would never see her again. It seemed that his life now revolved around railway stations and TB hospitals. From the year 2004 to 2006 he was admitted 5 times in the TB hospital. After discharge he continued the DOTS program while living at the station. He knew now about HIV/AIDS though he continued to have unprotected sex. Heroin became too expensive, so he switched to injecting drugs, which where easily available over the counter, no prescription required, in hundreds of Delhi's pharmacies. He lost control over things and his medical papers vanished, no one kept track of his clinical condition, his treatment was not strictly followed. It was then that we found him, when his last strength had left him. After a quick clean up, he was taken to the laboratory for a chest X-ray, HIV testing +CD4 count. A TB drug-sensitivity test was taken too. His health improved; it seemed community life strengthened his faith in himself; he had a new lease on life, all was not lost yet, or so it seemed. He often talked about his mother and wondered if she was still alive. He longed to return and see her once more. However, after three months his condition deteriorated, breathing became laborious, his appetite diminished, asthma attacks would bring him to the clinic in a panic. We moved him to the room nearest to the clinic. He lived for another month, it was painful to look at him, there was not much we could do for him besides supportive medical treatment. The last two weeks he lived on a diet of only apples, all other food he rejected, waving his hands in disgust, talking was near impossible. Then the end-battle came; five days of intense suffering, fighting for life, fighting for air, sucking the oxygen out of the mask, until his heart couldn't stand the tension any longer and broke. Shyam's lifeless body, bent over on his knees as if in prayer, the oxygen mask in a last desperate grasp. Background / Root Causes l Born in rural poverty l Child abuse by an alcoholic father Delhi Experience l Ran away to Delhi for work opportunity l Attracted to sex workers and influenced by Rickshaw Wallah lifestyle of drug addiction l Dysfunctional marriage l TB and HIV diagnosed and treated, but no follow up when he defaulted on TB treatment. l Information about HIV prevention came too late Ashram Intervention l Taken in by Sewa Ashram when he was again weak and ill l Accepted into the community, given holistic care, counselling and training l Treatment chest infection COPD was attempted but he deteriorated further developing cor pulmonale which could not be reverted in time with the resources we had. Medical Summary l Age: 37 l HIV Transmission Route: Injecting drug use / unprotected sex with Sex Workers l Diagnosis: HIV with Pulmonary TB, Bronchial Asthma with pulmonary artery hypertension l Outcome: Died at the Ashram on June 10, 2007. 27 Hashish (more commonly called hash) is a potent form of cannabis produced by collecting and processing the most potent material that female marijuana plants naturally generate as part of their growth cycle. 22 Small, brown, hand-rolled cigarettes 26 GEETA Geeta's old mother reminded me of a character out of a Dostoyevsky novel. White-yellowish wispy hair, cragged face, her worn hands clasped in supplication, adding theatrics and drama to her desperation. Ahead of her she pushed a veiled young woman, “TB,” the mother cried out with a hoarse voice,“My son suffers from TB, oh God, how do we survive, no food, no money, a leaking cot to live in. I have no breath left, no strength to carry my old carcass, we are left alone, me and my only boy, and I won't live another day. Oh God we are dying, what will become of us, oh Baba, my benefactor, my god, I throw myself at your feet, take my son, he is yours.” I stared at her son, a young woman, her long slender fingers, adorned with cheap rings and pink nail-polish held the sari as a veil before her eyes. Puzzled I take the girls trembling fingers in my hand and lift the veil from her face. The first thing I see is beard-stubble, then painted lips, a nervous tremor upon them, then her slightly embarrassed eyes reading mine. That must have been about seven years back. Geeta's condition was already very bad, she gasped for breath like her mother did. I was confused which of them was really the patient. However, mother, coughing and spitting like Geeta, helped her to settle in the Ashram. In just a few weeks Geeta became very present, very loud and very demanding. It was a lot of fun, but also really hard to keep her satisfied, and prevent her from running off or giving in to her demands of hair-oil and shampoo of a special brand and make-up, lipsticks, bangles, new clothes and special treats to eat. Geeta was incredibly fun-loving and had a great need to love. She could not restrain herself; she needed more money for her whims and therefore joined her gang of girls once again, dancing for money, being spoiled by boyfriends. Geeta's sexuality is what they call the 3rd gender. She celebrated this in fervour and in a rather self-destructive way. She loved to love - it eased the pain of not really being a princess - and in her heart she felt special. After weeks of carousing around she would find her way back to the Ashram. Breathless she would sink on what would become 'her' bed. Many times she left and as many times we received her back, each time looking more wasted than before. On one such occasion I felt it wise to do an HIV-test. She reacted with surprise when I mentioned this to her, like how dare I think such a thing. She knew what I was talking about; we are open about such things here. A few days later I approached Geeta carefully, though my eyes told her the story; the result was HIV-positive. She was stunned! I saw her grapple with the fact for just a few minutes, then she reached for the scissor, cut her hair and removed her rings; no dancing anymore. Dressed as a man, she looked even weirder, so very camp, this was definitely not her. However, she was not able to abide by the rather relaxed rules of the Ashram; she drank whiskey, used foul language and had boyfriends. Not long after that she donned her sari once again and danced for money and love. Her health deteriorated, she lost her strength and beauty. She lay sick in her mother's decrepit hovel harassed by the “girls” who would force her to dance once more. After they carried her by the hair over the street, her face in the gravel, she came back to the Ashram, sobbing all over, her face a bloody mess and a black eye. As she defaulted many times with ATT drugs and even ART, her condition went downhill.The TB bacteria in her body had metamorphosed into multi-drug-resistant strain; a deathly combination of AIDS/MDR-TB devastated her body. Geeta's old mother shuffled around with bedpans and toilet-paper. Geeta was in isolation in a separate room at the Ashram. Her mother sacrifices the remnant of life left to her, to care and be with her only son Nur Islam, as she stubbornly referred to Geeta. Both were dying. Geeta was breathing through an oxygen-machine, her eyes were open but could not see anymore, her hand responded to my hand, slowly her fingers closed around mine, softly pressing a last sign of life. A few more days she remained in coma, spasmodically gasping for breath, hands clutching her chest, mother at her side, docile, stupefied, overwhelmed by the amount of poverty, suffering, sickness and death she has known in her life. Once more her mother wiped the sweat from Geeta's forehead, mumbling her name, when the light went out. A power-cut of only four minutes cut off the fragile thread of life for Geeta. When the light popped back on a wailing goes out, hysterically the mother beat her breast, lamenting life and all its curses. Two months after Geeta died, her mother died too. Both are buried in a Muslim cemetery near Nizamuddin, Delhi's famous Muslim quarter, the birthplace of Nur Islam, Geeta. Background / Root Causes l Born in poverty l Uneducated l Suffered from TB Delhi Experience 23 l On the streets of Delhi in the company of other hijras l Contracted HIV from promiscuous lifestyle Ashram Intervention l Continual acceptance and medical care provided l TB treatment provided; Multiple defaulter of TB and HIV treatment l Surrounded by a community of caring people l Provided hospice care at the end of her life Medical Summary l HIV Transmission Route : Unprotected sex / sex worker l Diagnosis : Immuno-compromised patient with MDR TB l Outcome : Died of pneumonia, a complication of TB. 23 Eunuchs 28 29 MAYA Maya “Illusion” is her name, or she might be named after the mother of Buddha, who can say? Certainly not Maya herself, it all happened in a haze. She was born as a boy named Salim, in a poor Muslim family living in a tiny village in Rajasthan. Her Father would walk many miles a day, vending textiles and his mother farmed a tiny plot of barren land with the help of five children who did not go to school. Salim had to do many chores around the house, scrub plates, pots and pans, tend to some scrawny chickens, or make cow dung cakes24. One fine morning Salim was playing at the roadside, so engrossed in his game that he didn't hear the loud cackling approach of a group of eunuchs or hijras. All of a sudden they descended upon him: “Such a cute boy!” one cried out. The “girls” were all over him, giving him sweets, pinching him, like measuring him for slaughter, even looking at his teeth. They gave him something to drink too, its bitter sweet taste overwhelmed the boy, things started to turn before his eyes, then everything went black. He woke up naked in a strange house, cooed over by a heavily made up woman.“Hi sweetie, I am Dolly, your mother.”The lipstick amidst the beard stubble, the brutish face, the hoarse voice, the beady eyes adorned with massive black lines, pink and green, made Salim sit up in fright. Dolly sweet-talked the eleven year old boy and handed him new clothes, in vibrant colours, a lot of pink, they were girl's clothes. It was then that 'he' became a 'she', Maya was her new name.The girls adored their new sister, they dressed her up, taught her how to dance, took her along to marriages or births, clapping their hands demanding money, be blessed or cursed. In the night they gave her this bitter-sweet liquor to drink. In the morning she would wake up, ravaged and in pain. Three years after her kidnapping Maya and the girls were dancing at a wedding. Among the wedding guest were Maya's parents, they recognize Salim in the young girl dress. They made a hue and a cry but the hijras outsmarted them, it was their profession. Maya remained in the grip of Dolly, her master and guru, she danced for money and was drunk at night. When Dolly died, someone else took possession of the house and kicked the girls out. Maya ended up living by the dholak-wallah25 in the Yamuna Pustha slum, also Delhi's best known address for heroin. She never touched the stuff though she was a drinker, she preferred the hard liquor. Yamuna Pustha was Delhi's biggest slum situated on the grimy banks of the Yamuna River. In an effort to save the dead river, the famous slum was bulldozed in favour of green lawns and fountains. The Pustha community scattered out towards the northern suburbs of the city. Maya and a remnant stayed behind, the flyover at Yamuna Bazaar became their home. Yamuna Bazaar, home of the homeless, a community of destitute, beggars, rickshaw-wallah's, addicts, kids, hijras and the mentally ill. The temples in this area are what attract the poor, because of the opportunity to beg from the thousands of middle-class citizens who come to pay homage to Hanuman at his temple. The dancing business is brisk; Maya could hardly keep up with it. Her liver was playing up, her lungs too, she lost sight in one eye, her stomach was swollen, the alcohol was taking its toll.There were nights she did not remember the next morning.The life on Delhi's Wild Side was killing her. They came in the morning to the Ashram. They had arrived by bus, and were quite a sight: one guy with one hand missing, the other missing a foot, both drunk. The two hijras supporting each other, Sapna and Maya, were both ill. It was then that I learned her story, amazed that our paths must have crossed many times these last ten years. I was amazed at her ignorance of HIV/AIDS too, since Yamuna Bazaar is “covered' with NGO's. “Why are we not reaching these people, what is amiss with the communication?” I ask myself. I do not know 24 25 the answer, but I guess it has to do with love, devotion to the poor, the marginalized. Without compassion for the patient, no amount of mobile clinics, DOTS programs for TB, counselling centres or free syringe distribution will be able to stem the tide of HIV/TB. The fact that Maya and her community are marginalized says it all. On paper, programs look good, nicely embossed with a logo, prepared by managers seated at a desk, while the air-conditioning zooms comfortingly. On the basis of survey-results plans are drafted; conferences are attended, annual reports prepared, and then these board-meetings, the vanity of it. The destitute of Delhi are like a lost tribe, uprooted and struck down, driven to the margins of this rapidly developing city. A holistic approach, whereby the homeless poor are offered community-life, health/care, education and training, might bring about a change. I say it again: the sick destitute do not need a quick fix; they need community, a place to live. I supported Maya by her stick-like arm while we shuffled towards the TB ward. Her bed was near the entrance, fresh air, the song of birds. There was no argument when the scissor cut off her tousled hair, she kept her nose-ring though, the only thing left. Maya never regained her health, her liver suffered of cirrhosis, unable to process the medication.We placed her under closer scrutiny in one of the two beds reserved for the dying. Maya was with us for only nineteen days, her last five days were of an intense suffering, like being in hell, her hands clawing the air, gasping for breath in the oxygen mask, until finally her spirit was set free, discarding the body and the pain within. Background / Root Causes l Born a boy into poverty l No education l Child labour l Kidnapped by hijras as a child Delhi Experience l Sexual exploitation and abuse l Developed alcoholism l The 'Guru' died and she ended up in a slum in Delhi l When the slum is demolished, she moved under the flyover l Continuing the hijra lifestyle, she danced and drank l Despite NGO campaigns in Yamuna Bazaar, HIV/AIDS messages were not assimilated Ashram Intervention l At Sewa Ashram there is community and love l Health care is provided along with long overdue health education l Opportunities to explore her creativity and other activities that might be different from her past experience Medical Summary l Age: 35 l HIV Transmission Route: Sexual l Diagnosis: HIV with TB. Liver failure due to cirrhosis l Outcome: Maya died at Sewa Ashram on June 11, 2007 31 Used as fuel for cooking Drum-manufacturer 30 SURYA Sunday mornings I often stroll along the putrid embankment of the Yamuna River, different smells assault my senses: filth, human excrement, burning plastics, tandoori roti's26, the stench of urine and the vapours of scorching flesh from the nearby burning-ghats27. It is not a nice sight this “boulevard” along the dead river Yamuna, though it is a peaceful shelter under the open sky for hundreds of homeless and daily labourers, many of them sick, unable to rise from their spot. I scan people's eyes, observe the thinness of their limbs, gaunt cheeks, laborious breathing, then kneel down and offer help. My demeanour creates trust, the beard, the dress; obviously a Baba28. “What is your problem?” I ask. Then,“You come with me to the Ashram?” Vacant eyes stare into mine then slowly nod yes, giving a cough for answer. I mobilize some guys who are just hanging around and wave the ambulance, parked in the shadow of a flyover. After only two hours the ambulance is full; about seven or eight very sick and very dirty destitute leaning on each other; it would be good to have air-conditioning. When I saw Surya squatting at the riverbank, I was alarmed by his paleness and his light yellow skin colour. He looked anaemic. His hands were pressed on his stomach as if in pain. We deemed it wise to admit him in St Stephens's Hospital. After twenty-seven days, his discharge paper read: IMMUNOCOMPROMISED STATE WITH LIVER ABSCESS WITH B/L PLEURAL EFUSION & ASCITIS. TUBERCULOSIS & HIV+. Today Surya is on ATT treatment, his CD4 count is just above 400, he is skinny but doing well. He attends the yoga in the mornings and evenings. After one such session we sat down under the tree and he told me his story. His childhood was like that of so many little Nepali boys; roaming around, exploring the mountains, never seeing a school from the inside. Then his little brother died after he fell down from the mountain. It was time for Surya to grow up and start working. He was brought to his aunty in Kathmandu to get a job, ten years of age. Surya thus became one of the hundred of thousands of tiny, illiterate boys serving chai and food in roadside restaurants over the length and breath of India and its neighbours. Hardly anyone noticed them. The payment went to his aunty since both his father and mother had died in the span of two years. He told me they died of coughing! There was nothing left for him in his childhood home. He could fare better without his shrewd aunty taking his salary. He crossed the border and took the train to Delhi. The catering business in Delhi is thriving where thousands of weddings are celebrated in an ostentatious style all over the city and cleaning dishes is a profession of its own. They live by the banks of the Yamuna. A bag holds all their belongings; a towel, spare pant and shirt, a comb and a little mirror. Their bed is a cloth spread out on the ground. In the mornings they wash their bodies and clothes in the black Yamuna water, rinse their mouth, loudly gargling then spit it back in the river. When the summer heat settles on the city, the bridal couples escaped to the hills and the now unemployed men play cards under the flyovers smoke ganja and tell stories from home; how they used to hunt with a catapult or spear, how good everything was then; people were poor but they had a heart, unlike this city that eats the poor. On a particular lonely night, he went along with the others to a brothel, where the girls were nice and no questions were asked. It was only once that he went to such a woman, he assures me, only once since he could not afford it. I am inclined to believe him, the expression in his eyes was sincere, innocent. He was surprised when I showed him a condom, listened with attention when we explained.This is new for him, but he understands, a little. It will take some time, a long time, before a young man such as Surya Roti is Indian Bread made in a tandoor, a cylindrical clay oven in which food is cooked over a hot charcoal fire Riverside cremation area 28 Meaning “father” used as a term of endearment in India, especially for religious figures or sadhus 32 27 26 will be able to understand fully the concept of a virus, bacteria, white blood-cells, red blood-cells, how infection occurs and how to actually live with HIV. It is communities as Sewa Ashram that can offer him the opportunities for growth, literacy, skills, freedom of choice, a healing of the inner and outer man. Yes, Surya's father and mother both died of “coughing”as Surya almost did too. Background / Root Causes l No education, illiterate l Orphaned and left with an uncaring relative l Child labour worked in a roadside restaurant Delhi Experience l Ran away as a child from Nepal l Seasonal work cleaning plates for wedding parties l Non-drug user l Lack of awareness regarding HIV or protected sex Ashram Intervention l Discovered by riverside in critical condition and taken directly to St Stephen's Hospital l Medical care, love and counselling provided l Proper nutrition resulted in 6 kg weight gain in one month Medical Summary l Age : 25 l HIV transmission route: unprotected sex with professional sex worker l Diagnosis: HIV with pulmonary TB, immuno-compromised liver lesions. Emaciated, only 30 kg upon admission l Prognosis: Bad because he left Ashram and is likely neglecting treatment. 33 NEERAJ On the last day of the year 2006, the headlights on our beaten-up ambulance once again pierced through the black smog which hung as a vast cloud under the Yamuna Bazaar flyover. The searchlight shone upon emaciated silhouettes, bony limbs covered by a rag, feet hanging dangerously over the curb of the pavement. Zombie-like shadows floated like ghosts through the murky cloud of exhaust gasses, pierced by light-beams and cars. At some street-corners small fires smoulder, a burning rubber chappal, electric wire, plastic, with black gnarly hands and feet above it. The noise is so loud that it becomes no noise at all. It was cold, very cold, 5 degrees Celsius. The angel of death roamed around seeking those with no protection, the ill and old among the homeless. The stark shape of a rather long and very thin body, partly covered by a rag, makes me stop the jeep and switch on the blue alarm light. On the pavement I knelt down and looked into the huge eyes of a boy of about eighteen. His tall dark naked body was like a bundle of broken sticks, he had no weight at all, it seems, I easily can lift him up. On the first day of the year 2007, Neeraj lay comfortably on the crisp white pillows of St. Stephens Hospital. Diagnosis: Bilateral Pneumonia with pulmonary TB and hepatitis. He remained in the hospital during this critical condition for one month, one of our boys attended to his needs. By the time he arrived in our community the weather was somewhat softer, the morning mists gave the Ashram a dream-like quality. Neeraj sat in a wheelchair and took it all in, the trees, some barren, some with golden leaves, various birds crying out, haze lingering above the pond. Neeraj is now in his fifth month of treatment, but both his lungs are damaged beyond repair. Sleeping became difficult, which side to lie on? I see him sitting on his bed in the middle of the night, his cough accompanied by pain, in his hands a plastic pot in which he spits. He has gained no weight, and probably never will. It's doubtful whether the TB bacteria will ever be truly vanquished. There will most probably be a relapse. I wonder for how long he will be among us, a year, maybe? My notebook lies on the table, Neeraj sits opposite me, a soft, slightly hoarse voice answers my questions, it almost makes me depressed, stories like these, told with the breathless voice of a tuberculosis patient, and interrupted by violent coughing. Born in a mud hut in a village near Fatehpur, Uttar Pradesh. Neeraj was the eldest son in a family of four boys and one girl. His parents were small farmers. He attended school for only a few days until the teacher slapped his face.When the monsoon rains flooded the rice-paddies his parents sought work elsewhere. Neeraj joined them, working like a grown-up, harvesting onions or chillies. The fifty rupees he earned per day was handed over to his mother. Neeraj did not enjoy a normal childhood as he worked as a labourer. In 2006, his father, who never went to see a doctor, died of“severe cough and fever”No one knew about tuberculosis. . As the eldest son, Neeraj was told by his mother to find a job in Delhi. In front of the Old Delhi station, many boys and young men hung around, waiting for a job. Any kind of work would do for him. Contractors would scour the railway entrance in search for hungry able boys, any boy will do. Neeraj went along and cleaned kitchen utensils for just one day, as it was hard work. Yamuna Bazaar became his address. Some concrete rubble and bricks mark his little territory, above which was a dome of concrete, the six-lane Yamuna flyover. Neeraj found himself a good job, watching parked motorcycles and cars at an illegal parking-lot at the Hanuman temple. He was paid hundred rupees payment a day for preventing glue-addicted kids from touching the shiny vehicles of the rich. However, sleeping under a flyover and next to a traffic crossing which is one of the most crowded in Delhi, is bad for the health, especially when the lungs are already infected by TB bacteria. It was just a cough. Neeraj 34 thought that the cough was due to the smoke. Gradually his throat became painful and his voice hoarse. In the night, fever and mosquitoes tormented him. He skipped breakfast as he was not hungry anyway. Leaning on his bamboo stick, he would watch the cars, too weak now to chase the urchins. Winter descended on the city. A chilly fog intermingles with exhaust gasses and the smoke of roadside fires. The surrounding looks hellish, shadows danced in the orange glare of fires. Neeraj gazes at the concrete dome above him, unable to rise himself - he waits for death to come. A sudden blue light throws its circling reflections on the dome above, a hand takes his, fingers seek his pulse, then lift him up.Welcome home. Background / Root Causes l No education l Child labour l His father died most likely of TB l Mother sends him to Delhi to find work L Strong attachment to mother Delhi Experience l Works as a parking attendant while living under the flyover in Yamuna Bazaar l Contracts TB l Atmosphere of dirt and polluted air adds to the lung damage Ashram Intervention l Rescued from the roadside l Admitted to hospital, where he is given emergency treatment and is cared for by one of the volunteer workers of the Ashram l Care and community provided by team at Sewa Ashram Medical Summary l Age : 19 l Diagnosis: Right sided pneumonitis with TB and Hepatitis. l Prognosis: Bad due to non-compliance with TB treatment. 35 AJAY You want to see something other than the huge backsides of buffalos when you have herded cattle most of your life. Barefoot on eroded soil you blindly follow family conventions, docile like the cattle in whose dust you walk. Garlanded with fake rupees, eighteen year old Ajay ties the knot and circles the fire with a girl of only fourteen years. At the age of sixteen she bears him a son, and then two more children follow. The women putter around the hut or scratch the land, trying to bring it alive, but the earth is robbed of its nutrients; the crops wilt as soon as they have sprung up, or monsoon-floods wash away months of intense labour.When the government acquired the riverbank land, the family was willing to comply and accepted the meagre re-imbursement. They thought that anything is better than being a farmer, they did not even wish that on their enemies. Ajay was happy to set his sights on something different than buffalo backs. He promised his wife and parents that he would send money soon then travelled by train to Delhi, leaving Bihar and his past behind. It took him a while to adjust to the blazing sunlight before he was able to scan the area in front of Old Delhi railway-station. After a few days hanging out at the station, asking around at chai-vendors and coolies29, he was offered a job. His employer was a rather shady person who dealt in various goods of illicit nature. However, Ajay was paid eight rupees a day, the house was nice and the food was good too. One of his tasks was to courier black-market alcohol, in the night he pedalled his rickshaw to a government outlet. In silence cases of liquor were loaded, which Ajay, simple soul, transported to his boss. A special treat was always prepared for Ajay, two slim cigarettes, which, when he smoked them, brought dreams, then deep sleep. Unaware of the content of the cigarettes he grew addicted to heroin. For three years his master had him in his grip. Dependent on the heroin, Ajay was willing to do any kind of service demanded. When he lost his strength and sanity, he lost his usefulness and was thrown out. Now Ajay had to fend for himself, an addict among the addicts he learned their trade fast.The scar on his face tells me he was a pick-pocket; it was probably carved during an attempted robbery of someone who wasn't sleeping as deeply as Ajay thought. Heroin addiction is a full-time job; it becomes your wife and your life.You have to score as soon as you wake up from your dreams, like waking up in hell.Ten years passed; but for Ajay it was one very long day and one very long night. He never went back home, never saw his children and wife again. He did not know where they lived nor did he care. He would hold his hands up, like a question,”What to do?” He is sure that the HIV transmission must have been through shared needles, he would shoot anything and, according to him, was too wasted to have sex with anyone; it must have been the needle. He somehow expected it, they had told him once at a centre for addicts in the infamous Yamuna Bazaar area. Though the warning came too late, his condition took a dive. More dead than alive a colleague brought him to a Christian NGO. Tuberculosis infection was diagnosed. Ajay was enrolled in a DOTS program, but an HIV test was not done. An addict remains an addict, Ajay missed chewing tobacco which was not allowed, however, he did this on the sly until he was found out and discharged for this minor transgression. On returning to Yamuna bazaar he went to the centre for addicts for free syringes. The doctor confirmed TB and he was provided a regular DOTS treatment. An HIV test was also performed, though the result was not revealed to him. It became obvious that the medication was not sufficient, but the doctors were flexible and the medicine was increased to a daily dosage. For another month Ajay tried to survive on the street, though it was a bed and good food that he needed the most. 29 It was then that we found him on a Sunday morning at the corner of the bridge, a black silhouette in the blazing sunlight, hanging on to a stick. No words were needed. At Sewa Ashram we recommend HIV tests to all new-comers. It is amazing what comes to the light when they tell their stories; the mud hut they called home, the hardships of small farmers, the hunger and the child-labour, the ignorance and exploitation and the resulting drug addiction spiralling downward to death on the streets. I ask Ajay if he would like to go back to Bihar, walk behind cattle again. He contemplates this, shakes his head in the negative and mumbles, enigmatic,“Anything is better than being a farmer.” Background / Root Causes l Uneducated l Born into rural family with limited prospects Delhi Experience l Found job in illicit trade l Exploited by employer, developed drug addiction l Engaged in petty crime to support his drug habit l Contracted TB and HIV l Began DOTs program at NGO – dismissed for chewing tobacco l HIV test performed by addiction centre but results not provided Ashram Intervention l Caring community with daily medication, healthy food and restful environment l Counselling and education Medical Summary l Age: 24 l HIV Transmission Route: Injecting drug use l Diagnosis: HIV with Pulmonary TB, Chronic Obstructive Pulmonary Disease. Left lung is collapsed. Pulmonary function is less than 50%. l Prognosis: Fair. Undergoing TB Treatment. HIV stable, with high CD4 counts not yet requiring ART People who carry loads on their back in exchange for money 36 37 RAM Ram remembers his father as a tyrant: as someone large looming over him, who was unreasonable, aggressive, and had an explosive anger. What he also remembers is the hunger. The hunger was the worst. He was often hungry that the only thing left was to sleep. When Ram's father killed another man, they had to flee the cool mountains of Nainital, and headed towards the simmering heat of Gujarat. Father sold the plot of land for three thousand rupees and headed with his family towards a nondescript village near Ahmedabad where they settled in a slum. Father behaved with pompous dignity. Five sons, mind you. He behaved as if he owned the place, settling down in front of the hut and drinking the three thousand rupees, the payment for the land. Ram's father sent his five sons to work and do any kind of labour. None of the children were educated. Ram's brothers seemed to be pliable, and did what father said for all those years. Ram however did not - he rebelled, he had grown up. That last beating did it, he packed his stuff and left for Nainital, where his grandfather and some uncles still lived. Ram's grandfather made him work in his shop so that he could sit outside, drinking chai and smoking bidis. When the cash-box finally contained a thousand rupees, Ram stuffed these in his pocket and left with a new-found friend to the city of the celluloid dreams: Mumbai. He was a young man when news came to his ears that his father had died. Something seemed to break in him. All the pain came back, dazed. He was in a daze and would scavenge the streets of Mumbai, smoke marijuana with his mates, until everything dissolved in a big cloud of ganja smoke. His interest in women was waning. He had had some adventures in the brothels of Mumbai, but as girls were expensive, he prefers marijuana as it gave him peace. When winter descends on Delhi, many daily labourers, rag-pickers, beggars, scavengers and street-kids leave the never-ending summer of Mumbai for the season of marriage in the north. Delhi glitters, weddingparties are all over the place. At the periphery of the city are hundreds of party-lawns with names like “Richie Rich” or “Temptations” Ram washed the plates and dishes, worked hard, lived under the bridge and smoked his pipe. Then he became ill. Fever would keep him awake, pustules broke out all over his body and he felt so wasted. Unable to work any longer he remained under the bridge. Then someone took him along to the local centre for addicts. Someone in charge prescribed Adnok, a so-called heroin substitute; it must have been a favour, since Ram, rather simple, slightly retarded even, was not a smack-addict. However, the Adnok was pleasant, he worried less, though the swelling in his legs and the rest of his body increased. A sputum-test was taken at the addict-centre, his name scribbled in a book, a new pair of pants and a shirt provided for him, then, before he knew it, he was under the guidance of an attendant on the bus to Jodhpur, Rajasthan where he was admitted into drug-rehab. He was very sick. Why was it that nobody seemed to understand him? Ram didn't have a drug-problem, he was just sick. The staff in the Jodhpur centre finally realised that Ram was sick and brought him to another branch of the same organization in south Delhi. In this second drug rehab center Ram was advised to accept Jesus as Lord. Whatever he would pray then in “His” name, would be given to him. His pleading for medical treatment fell on deaf ears; they instead told him to“pray” . A week later Ram was discharged, a fifty rupee note was pushed in his hand, then someone led him to the bus-stop where he knelt down in despair. 38 The bus-fare to the station was ten rupees, another ten rupees for the bus to Yamuna Bazaar. The remaining thirty rupees left to him he gave to a rickshaw-driver who knew where we live. Fifty rupees spent well. An HIV test was done almost immediately, the result was positive. The pustules and swelling have disappeared, a simple treatment with the proper drugs. His HIV status has been revealed and explained to him.Yes he heard of HIV/AIDS and condoms before but he never understood. Although he had that weird journey from drug rehab to drug rehab, no one bothered to test him and counsel him, no one heard his complaint, no one really cared. He looks afraid, he thinks I will put him at the bus-stop with only fifty rupees.“Don't worry,” I tell him, “We are your family, we love you, stay with us.” Background / Root Causes l Grows up with an abusive father l Undernourished from an early age Delhi Experience l First migration is to Mumbai then Delhi l Becomes sick and seeks help at the local centre for addicts l Misdiagnosed as an addict, prescribed heroin substitute l Is sent to a drug rehab against his will, then discharged without addressing health needs. Ashram Intervention l Diagnosed with HIV l Given prompt medical treatment of symptoms l Counselled about living with HIV Medical Summary l Age: 27 l Diagnosis: HIV with furunculosis of the skin l Prognosis: Good, compliant with TB treatment. HIV recently diagnosis but CD4 counts remains high and stable, so ART not yet recommended. Patient returned to family. 39 ALI Ali was born as the fifth son in a poor Muslim family in the suburbs of Lucknow. Father sold whatever was in demand; the seasons defined what was to be sold, oranges, towels, watermelon, umbrellas or peanuts. Ali was just one of the hundreds of tiny kids whose laughing voices reverberated through the narrow lanes of the overpopulated slum. Carelessly they advanced in age, played with marbles or pushed a bicycle tire around with a stick. The hunger in their swollen bellies did not reduce the joy; they learned to live with it: a cup of chai in the morning, maybe lunch in the afternoon. Ali was sent to school, where at least a midday meal was guaranteed, Ali would wait for the bell to ring, but the dry stuff the teacher dished up was indigestible. He was unable to concentrate on anything she said, the numbers on the black board twirl before his eyes, it all meant nothing to him. The pressure to perform became too much for him, not worth the midday meal, he was old enough now to find a job. A boy of ten years can find a job anywhere, as they are in demand and are the cheapest labour you can wish for. Ali found a job in a 'hotel' – which was in reality a little shack on the roadside where you could drink chai30 and eat a bite. The little boy cleaned the tables with a rag, washed the glasses, scrubbed the kettle and kept the coal-fire burning, it was an almost a twenty-four hour job, seven days a week. Ali earned seventeen rupees per day, which is less than half a dollar. After four months he lost his job. It seemed that there was something wrong with his mind, although he doesn't know why he had to leave, his boss was furious. Confused he wandered around. People did not seem to understand him - they wanted to avoid the gaunt strange fellow. Ali turned into himself, living a life of his own imagination. He crossed the plains of India, and lost himself in the various personalities who live inside his head. The time that he suddenly popped up in his parent's house caused consternation. Father had died, from smoking too many bidis, or was it more likely due to TB, who can tell? Conforming to his brother's and society's expectation was impossible. The bride to be rejected the funny guy. Ali wandered away again, along the high-ways of India, from temple to mosque, from Ashram to Gurudwara, living on the scraps which fell from the table. I observe Ali as he sits before me cross legged. His back is slouched and his neck stiff which makes his movements robotic. He is very tiny; but his eyes are huge and very alive. He is only 28 years old, though looks twenty years older. I wonder about his past, but his stories are confusing. He tells me about his love for a eunuch, a very sweet but sad eunuch, not like the others. He even tells me the way she used to dress in pink, he obviously admires her, this phantom of his mind. When I ask him if he visited prostitutes, he suddenly gives me a gem of wisdom:“A poor man should not marry,” then starts talking about the eunuch again, how incredibly fat she was, but so sweet and sad, dressed in red and green this time. Ali obviously has some mental illness, in addition to being HIV-positive. We took him along to the Ashram because of his emaciated appearance, to prevent further illness, to protect him and others. I doubt if we can explain to him even the most basic knowledge about HIV as the capacity to understand is not there. I gave up further interviewing as his answers flutter around like the thoughts in his head. Background / Root Causes l Born into poverty and an overcrowded slum l Under nourished l Limited educational opportunity 30 Delhi Experience l Child labour l Mental illness resulted in job loss, social isolation, rejection by family l No treatment or care facility for mentally ill, ends up on the street l Mentally ill are a target for sexual abuse Ashram Intervention l Nourished, protected, loved in a safe environment Medical Summary l Age: 28 l HIV Transmission Route: Unprotected sex l Diagnosis: HIV. Mentally challenged, confused and confabulations l Prognosis: Bad, because unable to care for himself or comply with treatment A sweet spicy milk test that is very common in India 40 41 MUKESH I will never forget the moment I saw him for the first time, an eleven year old boy sprawled out between some hard-core junkies and a bunch of rickshaw wallahs. With an air of extreme unconcern he chewed on a matchstick, his almond shaped eyes sleepily careless. I immediately figured out what he was up to. I guess I saw myself, when I was young. I kind of plucked him out, like a flower, and brought him to the Ashram. Mukesh stayed a few weeks then flew back to Yamuna Bazaar. I went after him and brought him back again, but he stayed only for a while. The next time I found him, two strong dirty hands were strangling his arm, while another inserted a needle in his vein. His eyes were drowsy and dark-lined by an intense self-destructive loneliness. He just now returned from a drug-rehab centre where he had to stay after his behaviour at the Ashram became unacceptable. He managed for five months to follow a rather strict disciplinary lifestyle, though he found it so shallow. He also complained that they did not give him enough food. Mukesh is a growing boy, eighteen years old now who eats a lot. Mukesh is HIV-positive since his last escapade and he immediately caught TB. His is a story I have heard out of many mouths. Born in Uttar Pradesh, Mukesh's childhood was one of poverty, labour, no education, beatings and other hardships. Then, when sickness and death plagues the family, he was sent nearby Kanpur to earn money. So this is what he did: he sold bottled water at railway platforms and earned enough to inhale solution, one of the first things a hungry child learns in a big city, before progressing to marijuana, then smack.When you hit rock-bottom, you go to Delhi. Heroin is cheap; you do not have to pay for it, if you give your body, the guys pay you. Mukesh is as cute as a girl. Life was like a dream, there was not a moment he was not stoned, the grimy concrete on which he lay was perfect for him, the broken ampoules and packing of syringes shone in the sunlight, the guys were big and protective, he serves and is served on a wink. In the night the little ones goes out, armed with razor-blades they would slice open pockets of passengers thronging through a dense crowd. During one such day, a policeman caught him red-handed. He gave him a good thrashing, took a photograph, then kicked him out of the city with all kinds of threats. He returned the day after. There are some NGOs in Delhi, which are very well known among the addict population, as you can get all kinds of service; syringes, “substitute” drugs, counselling, an ID card, also a clinic where you can treat your abscesses or detoxification in a network of various drug-rehabs. I know many addicts that circle around from rehab to rehab, then land under the bridge again where an abscess develops. All the counselling given to them is in vain, the message of clean syringes and safe sex comfortably forgotten. As heroine is expensive, they make-do with drug-cocktails. When they are almost dead they turn up at the Ashram or I find them in a gutter. The same applied for Mukesh; spiralling down to ever deeper depths.“You break my heart,” I tell him.“If you continue to stumble around. Do you see these grey hairs?”He gives me a sly smile, then mumbles,“Sorry Papa, one more chance, I will paint again.”“Do we have canvas?” I enquire.“Oh yes, Papa, lots of it.” Then he runs in front of me to the atelier. That afternoon he paints a big flaming sun falling through a sky of fire. He has incredible talent, though his paintings can be rather violent, as there is a deep, un-confronted pain that burns inside. Background / Root Causes l Born in poverty l Child labour l Uneducated l Sent to Delhi to earn money for family Delhi Experience l Exploited on the streets at a very young age – heroin, sexual abuse l Drug lifestyle becomes 'normal' l He bounces around rehabilitation centres and also back and forth to Sewa Ashram l The message of safe sex and injecting practices is repeated over and over, but not heeded l Contracts HIV and TB Ashram Intervention l Timely medical intervention prevents complications from TB l HIV status is determined shortly after contracting the disease l Sent to drug rehabilitation centre l Returned to Ashram several times l Creative outlet in painting. His talent is discovered, and an expressive outlet is opened Medical Summary l Age: 15 l HIV Transmission Route: Sexual abuse, injecting drug use, and sex work l Diagnosis: HIV and TB l Prognosis: Fair. CD4 counts remain high. TB treatment completed 42 43 ABDUL Better not to place a picture by this story. I will attempt to describe his face and a little of what lies behind Abdul's rather hard eyes. His small eyes glint a bit these eyes, small, the face looking up as in defiance or inborn pride, a ruler or warrior's look.Though a film of doubt often dims the fire in these eyes, his hands move then, agitated, a smile curls his lips, a mixture of arrogance and fear. His face is square, built upon a strong neck, his shoulders and chest give a faint impression of the broadness they once must have had. As his strength leaves him, he leans on the table. His breath short, his skin is yellow and there are dark shadows around the eyes.With an air of bravado he relates to me snippets of his history. He was born, neither in India, nor in Bangladesh, but right in between, in a sort of no-mans-land. His father was a Maulvi, a teacher of the Koran. He would make the call to prayer – the Urdu versus which would flow between his lips, swaying above the scriptures, or going up the minaret to hear and see the call to prayer. Life was good then for Abdul. As an innocent ten years old, he would enjoy flying his kite. Shortly after his sister committed suicide and the family was ripped apart. Accused by a neighbour of an illicit relationship, she couldn't bear the shame and swallowed pesticide to end her life. Abdul's father started a business in textiles, for this purpose he travelled wide and far. He seldom came home and it seemed that there was another woman. This caused even greater animosity in the torn family. Abdul didn't want to be caught up in the cross-fire and decided that it is better to live life on his own terms. Calcutta was nearby; he just had to cross the no-mans-land. Each morning before daybreak he bought various goods at the vegetable whole-sale market which he loaded on a rented push-cart. How he loved that market, the shouting of the salesmen, the haggling that went on, the wads of rupees passing hands. It seemed money flowed easily here. However selling vegetables on the Calcutta streets was hard work. He had to push his cart in the heat, try and out-shout the other vendors and deal with the fat police men who wanted a slice of his earnings. At the same time he had to pay rent for his room and ensure that he had enough food for his growing body. It was a constant battle, as money did not come by easily. He thought that there had to be another way. There was no one to say goodbye to, so he simply boarded the train to Delhi, unaware that trains would be his line of business soon. As he entered Delhi he immediately secured a job, which was in a “tent-house” that provided catering at weddings and festivals. His subsequent jobs were of a scavenger, as plastic litter was aplenty in the city and options run out, pulling rickshaws next, still no easy money. By the time he was eighteen, he was ready for some action. Outside of the cinema he would meets others like him, youth with no values in life and boisterous. They would talk about the movie and imitate the hero, gun at his hip. Together they often disappeared into the night, looking for some action, maybe even some fast money. A gun at their hip the gang of four roamed at night through railway carriages, dragged their victims to the exit, stole their money, gold and rings, then shot them dead and dumped them out of the train at full speed. As the train roared on, nobody heard the shot, it was easy money indeed. When a bomb-blast tore through Mumbai, security was stepped up. Now no one could board a train with a gun in his pocket. Abdul did and the police arrested him. A fast court convicts Abdul under an anti-terrorist law and he was sentenced to five years in Tihar Jail in Delhi. He laid low in this jail, let others cut themselves up, he thought, instead he learned skills. It was not so bad in his ward. It was almost an ashram for him – there was counselling, he learned to repair shoes, makes bags and carpentry. It was a time of reflection for Abdul. However, breathing problems started to plague him in jail. He suffered from asthmatic attacks. Abdul would often double-up wheezing and gasp for breath. He would call out for a doctor who would come rushing to his aid, a syringe in his hands. From this however a dependence on injections was born and soon he could not live without it. When he left the jail, his first search was for a doctor. Yamuna Pustha slum. Abdul entered the clinic of a doctor. The doctor does not have the medicine Abdul required. Instead he said had something better instead and gave him an injection that did all sorts of things except bringing relief to his asthmatic attack. In panic he sought help from some friends who urge him to 44 cool down, “Here, try some of this,” they said, a brown powder on aluminium foil was handed to him. It knocked him out, he had never tasted anything so good. Next on his list of things to do was get married; a girl from Bangladesh would be most suitable. A year later Abdul got married, but he left his pregnant wife behind in no-mans-land and returned to Delhi for an exciting life of crime and drugs. Easy money was the only money he knew. He had a family to take care of but the need for drugs slowed things down a bit and he ended up in jail twice again. When his son reached the age of three, Abdul visited his wife and child, and brought gifts and gold. He then returned to Delhi again, where there was another woman waiting for him. She was nice, she was married, though she had a liking for him, and for others too. It was probably then that Abdul became infected with HIV, irrespective of the expansive counselling he received in Tihar Jail. A scrotal hernia made it impossible for him to keep up the relationship with this woman. It certainly did hurt and not only his pride. A surgery brought no relief as a shoddy job was done in some rundown government hospital. Life became meaningless, his friends were all in the lock-up and his possessions were stolen. Crime doesn't pay in the end. Abdul sat down with his old colleagues, the rickshaw wallahs of Yamuna Bazaar, played cards 'til late in the night, drank with the hijras, and committed some petty crime to just stay alive. His once mighty shoulders wasted away, fever tormented him at night. An ex-patient who was treated for TB at the Ashram recognized Abdul's disease and brought him to our community. He was diagnosed with pulmonary Koch's (TB) and HIV and urged to stay for treatment the full six months, maybe even longer. He tells me that a work needs to be done inside, in his spirit. His son refuses to see him,“You are not my father,” he says,“You murder people for money, I cannot accept.” Abduls hands move in agitation, the smile that plays around the corner of his mouth looks like he is about to cry, though then he straightens himself and stares me hard in the eyes. 45 days later he disappears. Background / Root Causes l Family disintegration due to sibling suicide and absent father Delhi Experience l Joins up with gang seeking easy money through robbery and murder l Subsequent arrest and prison time provides skills and exposure to counselling and education about HIV/AIDS l Breathing problems and a dependence on injections, drugs, leads to heroin use l Past counselling about HIV/AIDS is forgotten, and he becomes HIV positive l Returning to 'old friends' at Yamuna Bazaar, he develops TB Ashram Intervention l Brought to Sewa Ashram by an ex-patient who recognises TB l Proper medication, good nutrition, and rest in peaceful environment l Acknowledges that inner transformation needs to occur Medical Summary l Age: 39 l HIV Transmission Route: Unprotected extra-marital sex l Diagnosis: HIV with Pulmonary TB and scrotal hernia. Asthma and depression l Prognosis: Bad, due to combination of HIV and TB treatment. Health further compromised by dangerous lifestyle choice and likely non-compliance with TB abd HIV treatment 45 VINOD He never knew what killed his father, no one in the family did – he just died and that was that. In the nights, Vinod was kept awake by the violent coughing of the old man. The atmosphere in the hut was suffocating: the air was stale and heavy with the smell of sickness. He remembered his father lying on his cot, limbs wasting away and finally never rising again. When he died, Vinod and his family mourned and lamented their loss until the body was burned. Then all became silent again and the family returned to the fields, some one else's fields cutting rice, wheat, tilling the soil until dusk. This was as it was supposed to be, no one complained. They rose with the cattle and when the sun went down, would walk home again. Three years after his father died, Vinod's mother became ill. While labouring in the field blood poured out of her nose. An effort was made to consult a doctor, though the payment he demanded was above their reach. Mother kept labouring until she died. Once again the village women came over and wailed, once again the eldest son lit the pyre.Vinod was alone now; his five sisters and one brother were all married, the mud hut was empty but for him.The season of harvest kept him alive, though on the horizon, dark monsoon clouds grew. He felt very lonely. There were a group of friends in his village, Vinod unknowingly played their buffoon. They had great fun in taunting the innocent boy, making him part of their irresponsible behaviour and would leave him in the lurch when trouble ensued. One quiet evening after the cattle had returned home, the boys strolled by and told him they would leave Bihar for elsewhere, and left an address of a factory in Delhi Some months later Vinod hungry and alone, packed his spare belongings in a bundle and took the train to Delhi. He thought he had nothing to lose. He went to the same factory that the village boys had mentioned. The factory made bicycles parts; they paid him well, 3000 Rupees31 a month. He had never seen so much money. His living quarters were a cluster of huts built against the factory wall. He shared the hut with six others, among them were the boys from his village. Vinod was their buffoon again; their laughter was mostly at his expense. One night they took him to the city, told him in malicious tones that the time had come for him to meet a woman and become a man. G.B. Road was the address, the girls, flowers in their hair, waved at him from the balcony. With his heart beating rapidly he climbed the stairs. That night he lost his virginity but not yet his innocence. G.B. Road is lined with brothels, floors divided by curtains and ply-wood into squalid quarters just wide enough to accommodate a much used bed. Girls are plentiful; for over a period of three years he always played with another one. Unaware of his HIV status, he continued his escapades in the anonymity of Mumbai. No one knews him there. Excessive behaviour had no consequences. When the season changed he returned to Delhi to work in the factory once more. Things were the same in his hut as his friends continued to taunt him. Nothing positive seemed to come out of it. Then it started; fever at the nights, a searing pain in his abdomen, diarrhoea and loss of appetite. His condition became rather uncomfortable for the other men in his room, so they put him in a rickshaw and drove him to Nirmal Hriday, Mother Teresa's House for the Dying Destitute in Manju Ka Tilla, Delhi. The sisters took Vinod into their care, the doctor correctly diagnosed him with TB and HIV infection. ATT treatment was prescribed for a period of six months. At the end of this period a sputum test was done which proved to be negative and the patient was discharged. Better clinical examinations could have prevented the relapse, he was not fully cured of TB yet. Two months later he was back at a government hospital, and a doctor brought him to our attention. We took him home with us. Sitting at the table I wrote some notes in the register. “Were you aware of government provisions, like free health care?” I ask. He had no idea what I meant, he had never seen a hospital in Bihar. He 31 presumed that if a person became sick he/she would die. He looked at me with eyes wide, like a child on his first day in school. “Did you ever hear of TB, or HIV/AIDS, STD or sexual transmitted diseases?” He shook his head and said,“No,” His head was bent in shame. I lifted his chin and showed him a condom. His eyes became even bigger - he had never seen such a thing. Sex was a thing you did, not something you talked about. Though the girl's eyes and bodies speak sexual language, the verbal abuse hurled around in brothels and slums is sexually replete, in spite of the fact that the whole massive business is all about sex, it still remains a taboo. We do not speak about it, we avoid it, we feel shame, it is something dirty, something other people do, not me. I take his weight: 36 kilo and then wish him luck. He shuffles back towards his bed, still shaking his head no, not understanding what this was all about. Background / Root Causes l Medical care inaccessible to family l Orphaned and deserted Delhi Experience l Move to Delhi seeking employment l Able to secure a well-paying job l Friends introduce him to brothels and he embraces a promiscuous lifestyle l In 3 years he never sees a condom or hears about HIV/AIDs or STD's l Illness strikes and he is taken to a Christian NGOs - HIV infection and TB are diagnosed l Completes standard TB treatment but then relapse Ashram Intervention l Government hospital refers and treatment is continued at Sewa Ashram l He hears for the first time about HIV/AIDS,TB and STD's l Caring community with peer counsellors is provided Medical Summary l Age: 30 l HIV Transmission Route: unprotected sex with professional sex workers l Diagnosis: HIV with Pulmonary TB l Prognosis: Reserved. Mild to moderate derangement of pulmonary function. Approximately $75 USD 46 47 MUKHTAR Bangladesh, Dhaka, 1986, Muktar was born in a cramped mud hut amidst a bustling family of four brothers, one sister, a worried mother and a hard drinking father. The baby grew up, carried around by his sister, as there was no place for a small one like Muktar to crawl around.When the baby became a little boy, a uniform was measured on his tiny body, a bag slung over his shoulders and, hand in hand with his sister, he entered school. During class he looked out the window and didn't hear any word the teacher spoke. Instead, relieving the pangs of hunger, the desire in his belly, is what he dreamt of as he would wait for the sound of the bell. What fun it was to leave the school-building screaming, running headlong into the freedom outside. Three dreary years, he attended school then he gave up, never having been able to concentrate. His father, who dabbled in shady property deals, made life difficult for him and the family: his drinking and abuse drove the family apart. His three older brothers were already addicted to heroin, his mother burdened by worries. When Muktar was seven years old, he was introduced to drugs too. Now there were four sons using heroin. Mother became almost insane, trying to make ends meet. Her husband's income was spent on alcohol and gambling. Her own sons fleeced her, too. Ironically she became a match-maker for money, finding a “suitable” bride for a “handsome” boy. Then Mukhtar's father died - TB, Muktar remembers, only these two letters, TB, without understanding what it means. Life was meaningless anyway. His two brothers passed away very quickly, probably an overdose, or just killed by someone. Who knows? The other one was still around; more dead than alive. When his mother died of sorrow and their hut was taken over by an evil uncle. Muktar decided that enough was enough.“Delhi is a very good city,” a friend told him,“Drugs are very cheap over there.” So off they went to Delhi - to Yamuna Bazaar, where the drugs were. Muktar was by now very skilled in cutting open pockets, with a piece of blade under his tongue, with a sly movement that went unnoticed removing money and goods out of pockets and bags in the push and shove of Old Delhi Railway Station. I remember when I saw Muktar for the first time; I had just arrived in India, and was not acquainted yet with the extreme poverty and suffering which are now part and parcel of my life. Muktar didn't even look like a human being; hunched under a bridge, his head slung back in his neck, eyes closed, mouth open, dry foam and spit on dirty and rotten teeth. I had never seen anything like it. Confused, I turned away to find him again some months later. It was then that I took him along for the first time. The second time I diagnosed him with TB, after three weeks of treatment he ran away taking along some blankets to sell. Two months later, I found him again, more dead than alive, a boy twelve years of age. A short time he would stay and then steal away in the night. In ten years, Muktar ran away eight times, eight times I opened my arms to receive him back. I especially remember that one time when he crawled in on his knees, his hands in worn rubber sandals:“One more chance,” he breathed out. Muktar has actually defaulted on TB treatment over a period of seven years. It's a wonder he is alive, but is he alive really? I'm not a doctor, though I sense that the persistent conditioning since the age of seven early youth has ingrained addiction throughout his being. Finally, his tuberculosis infection was successfully treated with ATT. Muktar became fat. He is part of our team, works mainly with the patients, washing them, feeding them, putting them to bed, he is good in doing that. His face, which carries the scars of many fights, looks kind, the crooked nose, the plastic-teeth smile, a 48 4 cigarette between his lips. However, addiction is still present; it rages through his body, uncontrolled, untamed, it is not heroin now, but sex. It was only last year that he became infected with HIV from a girl who lived in the nearby slum. He had forgotten to carry condom with him, couldn't find them in the dark night. I just caught him outside the Ashram with some empty oil-tins he was about to sell. I take him to my room and search his pockets finding only condoms and some suspicious looking aluminium foil. “Muktar” I desperately call out, slumped back in my chair, hardly finding words to communicate the impossible position he is in.“Muktar, didn't you hear then, didn't you understand?” Muktar does not listen, he does not hear, he is still that little boy looking through the school-class window, dreaming about the freedom outside. Background / Root Causes l Born into poor living conditions with an alcoholic and abusive father l Undernourished l Limited education l No understanding of TB when father dies of it – effective healthcare was not accessed for him Delhi Experience l Lived in Yamuna Bazaar, in a 'community' with other drug addicts l Indulge in pick pocketing and petty crime to support his habit l Multiple defaulter of TB treatment Ashram Intervention l Taken in by Sewa Ashram many times, but due to addiction, he runs away l Back in the Ashram, he completes ATT l Finds purposeful work in caring for others l Sexual promiscuity follows – and unsafe sex leads to HIV infection l He still struggles with 'lifestyle choices', but is accepted, loved and cared for Medical Summary l Age: 23 l HIV Transmission Route: Unprotected sex with sex workers / promiscuous sex l Diagnosis: HIV with treated Pulmonary TB l Prognosis: HIV status is a threat to his life. Suspicion of latent TB because of history of noncompliance. 49 5 GIRISH “Aauumm,” it is six in the morning, Girish leads a group of patients in yoga. “Aauumm,” long drawn exhalation. The deeper breath taking along all that is impure, releasing the hold sickness has upon these recovering TB patients. Arms are raised simultaneously, lowered, then raised once more. In the treetops a black drongo calls out, swoops over the men, then settles in a teak tree. ”Wake up,” it calls again. After one hour of yoga someone rings the bell for a second time and the community shuffles towards the Mandir many on crutches or driven by wheelchairs, hungry for some morning devotion. The sound of drums and cymbals, a lot of coughing too, then the drongo calls out again: “Karuna, compassion. Girish's face is as if hewn from marble, straight lines, blind eyes in carved out sockets, prominent chin jutting out. His gaze intensely staring towards something I do not see, he recounts his history. Girish is 44 years old and comes out of a family of civil servants. His father was a senior official in the land department. They were not poor. By the time Girish finished eighth standard he left school, family and the state of Uttaranchal for a more exciting life in Delhi. He found a job with an electrician and served as an apprentice for one year. Then he moved to Mumbai, city of his dreams. Mumbai had a lot to offer for a strong young man of eighteen. Girish found employment at an oil company, a steady job with good income. Determined to make it, he climbed the ladder first by washing the company buses, then cleaning tankers. Since he found favour with his boss, he was allowed to drive a car. His boss started relying a great deal on Girish and sent him out on various errands. One of those errands was the procurement of prostitutes for the lavish parties the company honcho's held in farmhouses in the green belt near the city. Girish's discretion was valued by his superiors. The young man would fill their glasses to the brim with whiskey, light their cigars and shuffle decks of cards, while observing all that was done, and then he would follow their example by spending the nights in the brothels of Mumbai. When Girish was 23 years old he followed the conventions of society and married.Two children were born, he loved his wife, kept his job at the oil company and kept procuring girls for his superiors: he knew the brothels inside out. 1998. It started with a fever and pain behind his eyes. Malaria drugs brought no relief, the pain and fever continued. At a local hospital he was diagnosed HIV+ and pulmonary tuberculosis. The hospital advised him to also screen his family; the wife and daughter were found to be HIV+ too, the small boy however was spared this verdict. Girish's eyesight became dim, as if a sudden darkness cast a spell upon his life. His world collapsed. Gone were the wild nights, the superb whiskey, gone was the daylight in his eyes. As a blind man ticking with his stick, he brought his wife and children to his ancestral village, seeking support from his family. When he arrived, led by the hand of his small daughter, the village became alarmed, his family firmly closed the door and their ears to the pleas of the blind father. No amount of explanation would do, HIV is dangerous: do not come near. Cursed and abandoned he left wife and children behind and returned to Delhi looking for a cure, a blind man searching. A year later, his wife died and his brother brought Girish's children to an AIDS care centre in Delhi. Girish himself was also lucky to find such a centre. Some stability returned to his life, although he had lost his sight he had not lost that inner strength, In silence he practised Hatha Yoga, shutting off the wrong desires, seeing the self in the self, blind but seeing. I look at his rock-like face, at his eyes that seem to see more than mine. During the two years he lived in our community I have been impressed by his determination to get around as one who sees. He finds his way in Delhi, occasionally visits his children in another rehabilitation centre taking some presents along. At the Ashram he is the stoic worker giving massages to stiff-limbed old men, physiotherapy to the amputees, and leads lengthy yoga practices 50 mingled with pulmonary exercises for around 40 tuberculosis and HIV patients. Those blind eyes of his capture my imagination; I ask him what his vision is. “Learning to read Braille and teach others,” he says. Nothing will stop him his face tells me. Background / Root Causes l Lifestyle included activities with high risk of HIV exposure Urban Experience l No knowledge of HIV, STD, safe sex. l Diagnosed with TB and HIV infection l Infected family with HIV l Stigmatized and rejected by family due to HIV Ashram Intervention l Has found acceptance as well as his own place in a community at Sewa Ashram l Able to use his yoga and massage skills to positively impact the lives of those around him. l Motivated to learn Braille and to teach others. Medical Summary l Age: 44 l HIV Transmission Route: Unprotected sex with professional sex workers l Diagnosis: HIV with Pulmonary TB. l Prognosis: Good. Long-term resident of Sewa Ashram who is fully compliant with ART and TB treatment 51 VIJAY PAL Before disappearing into one of Guwahati's32 alley-ways he looked back one more time, the last thing he saw was his father raising his fist once again. Vijay Pal couldn't stand the pressure any longer, the constant beatings and verbal abuse. He ran away from home. Out of breath he arrived at the railway station and jumped the train to Delhi. Seated on the floor, next to the toilet, he stared at the passing landscape and dreamed about Delhi. Would it be like he once saw in a movie? Grand avenues covered by majestic trees, palaces amidst lush parks, wealth and glamour, freedom at last? The nearer the train came to Delhi, the greater the distance between Vijay and his fellow travellers. Some well-dressed men, golden rings flashing, bit angry words towards him, someone kicked him from behind; the train entered Delhi's suburbs, with a screeching halt, pushing and shoving, migrants spill out of the compartment to be almost trampled by a throng of people rushing towards the exit. Everyone in this city seemed to be in a hurry. His belongings in a plastic bag, he squinted into the sun seeking where to go. After some days spent in traversing the city, he found a job as a sweet cook, stirring huge kettles with boiling oil from morning 'til late night. After two months of slaving away without payment he approached his employer who merely shooed him away. Vijay Pal, a twenty-two year old migrant from Assam, had no rights in this city; exploitation was common. Disillusioned he joined others like him, queuing up before a liquor store, the illicit stuff was very cheap, it knocked one out. In the night they lay down on curbs in the middle of the road, the exhaust gasses repelling mosquitoes, a soft breeze cooling their limbs. In his dreams he saw his father screaming at him, a toothless betel-leaf farmer, he saw the school he never entered, he saw the disappointment in his mother's eyes, the sun rising above the Assamese mountains. He would wake up with a heavy pain in his heart until his friends took him along for some more adventures. In the shadow of a bridge someone gave him his first injection; all pain and fatigue melts away, a warm feeling in his belly and veins spread an unknown pleasure, then he slept again; dreamless. Six years later Vijay knew his way around in Delhi. He was a client of a local NGO which supplied sterile syringes and substitute drugs. Illegal pharmacies which thrive in the area supplied him with vials of Diazepam, Avil and Norphine for pick-pocket prices. The cocktail he makes of this is topped off with a crushed tablet of Tidigesic or Adnok33 supplied for free as a substitute drug and crushed into powder on request with a pestle and mortar. Neither instructions on how to inject nor counselling on HIV-awareness was carried out. In some cases even if counselling was carried out, it was done in an informal manner by untrained staff. The addicts were either too drug-induced to get the message, or in most cases, too illiterate to understand the concept of the workings of bacteria or viruses. The system failed. HIV spreads its tentacles among the addicts, instead of being called to a halt. Screening the clients/addicts for TB is not done, although a DOTS program is available at the same premises. Testing for HIV is done in some cases, though very seldom is the result given to the patient. Abscesses go untreated for many months, the veins in the legs develop thrombosis, wounds become chronic. It is in such conditions that we found Vijay breathless, his lungs extremely congested, his body emaciated.Test-results showed extensive tuberculosis and HIV-infection. 32 33 Today, Vijay works in the kitchen at the Ashram. His TB treatment is completed, though his lungs are damaged and might never work properly again. His CD4 count is above the 200 mark, so no ARV drugs are supplied to him yet; such are the rules concerning the free supply of Anti Retro Viral drugs. I ask him what he feels about the future. Any plans? “I want to live with you,” he says,“Let me serve here at the Ashram, so I may learn how to live.”Vijay is welcome. Outside he wouldn't make it, outside it would spell“Death” . Background / Root Causes l Alcoholic and abusive father l No education l Run away to Delhi Delhi Experience l Worked as a sweet cook l Exploited by his employer l Alcohol and drugs are a cheap escape from reality l NGO supplies syringes and substitute drugs under needle exchange and substitution therapy but messages about HIV and safe injecting not effectively conveyed l Same NGO has DOTS program but doesn't detect his TB Ashram Intervention l Found by Sewa Ashram, diagnosed with TB and HIV infection. l Taken into an environment where he is protected, cared for and loved Medical Summary l Age: 29 l HIV Transmission Route: Injecting drug use / shared needles l Diagnosis: Pulmonary TB and HIV, bilateral extensive infiltrative lesions of the lung implicating TB. Oral Candidiasis. CD4 is under control so ART is not indicated. l Prognosis: Fair. Unable to do heavy labour, less than 50 percent lung function. Prone to recurrent lung infections In Assam Norphine, Tidigesic and Adnok are common names for buprenorphine, a medication used to treat narcotic dependency 52 53 NEETU Everything was always so dark, their little house and courtyard embedded in a solid black cloud, with no difference between day and night. The walls and ceiling painted by smoke, piles of charcoal for sale, lumps of wood stacked up for burning, little brother playing amidst the ashes. His father's red veined eyes stood out against the black soot-covered face, sweat poured down his tawny arms. All of a sudden, in the light of the fire, his hands would reach for his throat, convulsively he bent over, struggling for breath, almost suffocating, he would wait for a few minutes, leaning on his shovel, then resume work again. Mother was as black as Father, in a corner she moved around like a crab, gathering coals, making piles, chopping wood. The smoke irritated Neetu's eyes, his throat, his breathing was fast and short; a defective little pump inhaling toxic gases. His belly was swollen like a balloon, appetite had left him, he always had a cold and a rattle in his lungs. Sometimes he went out in the fields, to scavenge around for some crippled wood. He liked being outside, though his mother would always call out; work was never done. He learned the trade of charcoal burning from his Father who relied more and more on Neetu while his strength was diminishing. Kneeling, bent over on his cot he held his head between his hands, the muscles on the sides of his neck tense from the extremely laborious breathing. After some months of intense suffering the reflection of burning embers slowly died in his wide open questioning eyes. Two years later Neetu's mother joins his father, from darkness to light. The tiny hand of his brother in his, they lit the funeral pyre, in a flame she went. Together they stare into the fire till the body has turned into ashes, white flakes in the wind, then they stand up, walk home and resume their labour, orphaned. After another two years of slaving away above fire and coals, his small brother, now ten, was deemed old enough to take care of himself. Sick of the soot, smoke and fire Neetu left that hell and the backward state of Bihar for another illusion: Delhi, money, rupees.The promise of money and freedom to be bought is what gave a sense of direction, affirmation, value to his life. For two thousand rupees a young man bends his back in a factory twelve hours a day, six days a week, sharing a simple room with a couple of guys. The young men have no rights, or access to good healthcare. Nevertheless, they comb their hair and climb the cinema stairs for just another illusion. Neetu takes pride in the fact that he sewed certain patterns on ladies' fancy clothing- he is a designer he tells me, his eyes light up, “A designer.” Neetu however, was unaware that his physical constitution was undermined since birth. He had never taken notice of the fever and cough that had accompanied him since he was a baby. Everybody coughed and had fever: his father, mother, everyone he knew, nothing to be alarmed about. Until he started to cough blood, then he knew it was serious. The boys in his room told him to go to a hospital. Neetu was admitted to the government tuberculosis hospital in Delhi. Mangy dogs lie around the filthy corridors, rats scurry away before our feet, in corners lie piles of dried chapattis34, half empty glass bottles used for lung-drainage, some syringes, cigarette-butts, and filthy bandages. The walls are stained red from the spitting of gutka35 and chewing tobacco, the poor man's drugs. Climbing the identical staircases was like ascending a labyrinth of grime. The same stained walls, the same desolate corridors, the same dogs, and the same uninviting doorways led you further into this labyrinth of sadness, into big halls lined with rows of rusty beds disappearing in shadow, into darkness. Neetu survived the twenty-eight days in this inhumane institution, before he was brought to Sewa Ashram. After three months he suddenly disappeared. Seduced by the promise of rupees, he went along with a stranger who sold him to a farmer. The farmer, an incredible bully, forced Neetu to clean stables and to carry 34 35 the dung on his head to the manure-pile. Neetu begged for release, but the farmer was adamant; Neetu was his property now. After weeks of exploitation, he escaped from the farm, more dead than alive, and reached Delhi, where he tried to survive on scraps of food handed out at a temple. When the sun reached its zenith and her flames consume those without a home, he took the bus to our Ashram, returning after 5 months. I went through the wad of papers I find in his pocket, different papers with different names, some are his. One of them the result of an HIV test,“Positive”it reads. I ask him if he understands what it means.“Yes,”he answers, he heard about it on the radio, sometimes TV too. Yes, he slept with girls, love for thirty rupees only. He closes his eyes under my searching gaze, then looks up, tears brim over “Life is like being eaten by crows,” he says, “They pick the flesh from your bones while you're still alive.” Background / Root Causes l Polluted home environment results in both parents dying prematurely, likely from pneumoconiosis (Coal Workers Disease) l Health undermined from birth. l Child labour l Orphaned Delhi Experience l Migrant from rural area to Delhi l Worked in a cloth factory sewing ladies fancy clothing l Utilisation of healthcare is limited; continual health problems are not deemed 'serious' as sickness is perceived to be normal l Late diagnosis of TB l Illiteracy and lack of practical knowledge inhibit good decision making, including defaulting once TB treatment was started l Admitted to Government TB hospital where substandard care was provided in unhealthy environment with no counselling on importance of completing treatment. Ashram Intervention l Educated about TB and HIV at Sewa Ashram with living examples within the community l Daily medication, nutritious food, and peaceful environment Medical Summary l Age: 19 l HIV Transmission Route: Unprotected sex with sex workers l Diagnosis: HIV and TB l Prognosis: Good. Responding to TB treatment Indian bread A mild stimulant preparation of crushed betel nut, tobacco, and sweet or savory flavorings used like chewing tobacco. 54 55 ILIYAS I thumbed through Iliyas's hospital file and saw that all the papers, reports and tests were labeled with the ominous black BIOHAZARD36 logo. You couldn't miss it. Everything was stamped with this strange circular design. I looked into his questioning eyes and thought I even saw the mark on his forehead, like a modern day leper with a mark instead of a bell to keep others at a distance. That sums it up, the history of a young man's illness: HIV. Biohazard? Iliyas, 33 years old, from Karnataka in South India. His parents were caring but poor, both served as cleaners, sweeping the houses of the rich. They managed to place him and his siblings in school. Iliyas was the eldest in the family. His parents' expectation on him was high. His parents slaved away to provide food and education to the children. When times were very hard they would plead with the uncle, a government servant who was comparatively well off. Though the uncle was usually lenient, he was at times strict. When Iliyas was twelve years old, his father and mother became too weak to work. It was time for Iliyas to bring in the money. Iliyas ran all kinds of errands for his uncle while continuing school. When he was fifteen, his uncle helped Iliyas to acquire a driving license and then introduced him, as driver, to some of his friends who were government servants, property dealers, builders – people who were rich men in the eyes of the poor. The gullible boy, innocent until then, soon discovered the seamy side underlying the activities of government babus37 and their friends: late night parties, shady deals, and women, of course, lots of them. Iliyas shared in their pleasures. Eighteen years was deemed a good age to marry. Iliyas's bride was only seventeen. According to the traditions and expectations of their community the two were wedded to one another under Muslim law. According to the same traditions, a baby was expected in nine months. The uncle, administrator that he was, made a mental note of the date a son might be born. Ten months later, no crying of a new born babe was heard, the uncle checked his calendar once more. Two years later, still no child, the wife upset, crying for a baby, the uncle grumbling“such a waste of money.” SEX was written in big bold black letters on the sign board of the local specialist in fertility, venereal diseases, sex-determination, ultra-sounds, etc. The bearded doctor performed some blood-tests on the couple and asked them to return in a week for the results. Seven days later they entered the clinic again, nervous, both their hearts beating like a drum. The doctor took off his glasses and started fuming at Iliyas; “What kind of man are you? What the devil do you do when your wife is not around? You have a dreaded disease, infectious, incurable.” The doctor was rather direct and told Iliyas in a most disgusting manner how HIV is transmitted and why condoms are important. The uncle was also duly informed, it was then his turn to shout at Iliyas, calling him names. Iliyas's wife, miraculously, was found to be HIV negative. God had spoken, Inshallah. Iliyas was told to leave - leave his wife, his house, his village, no forgiveness for this sinner marked by evil. Iliyas arrived in Delhi at Nizamuddin railway station, near the heart of the ancient Muslim quarter. The call to prayer, sung from the many minarets, guided him toward a crowded mosque. Hundreds of beggars were squatting in orderly rows.The beggars received food-coupons from the volunteers in the mosque.They were then given food in the local restaurants situated opposite of the mosque. The bill for the food was paid by a Muslim charitable organization. Iliyas became a beggar among the many, together, yet so alone. The stigma he carried was not something to be shared with others. In exile he hid himself in shame, strong liquor somewhat easing the pain. 36 37 He never touched a woman again, he became estranged from his own body, regarding it as filth. Then, one day he felt his upper legs swell up. He dragged himself to a government hospital where they immediately admitted him and surgically removed the pus from the abscesses that had grown near his lymph nodes. It has been three years now, but his body still carries the scars, the wounds are still not healed. He supports himself with a crutch. He dragged himself around, sleeping among the tombs of Sufi saints. HIV, this dreaded disease had reduced Iliyas to an out-cast, an untouchable. However, the untouchables have their grapevine too. Someone said “Sewa Ashram”“Ton baba,” another advised him, one who was somewhat more literate . provided him with the address. Iliyas arrived at the Ashram, he hung on his crutch and started to cry. Iliyas is currently admitted to a good reputed private hospital. There are some complicated infections in his body. His fever pattern leaps and falls up and down, his mood swings in the same direction, from elated with hope to depressed and beaten. Again I flick the pages of his medical file, BIOHAZARD they scream. I'm happy Iliyas does not know the meaning of this logo, but I also wonder how this will influence those that are meant to take care of him. How do young inexperienced nurses respond to Iliyas who is, according to the doctors, a biohazard? Don't touch the untouchable! I kiss Iliyas and I kiss him once more. Background / Root Causes l Grew up in a poor, but loving family l l l Educated to 10th grade standard No awareness of HIV risk in having unprotected sex outside of marriage HIV diagnosis given harshly resulting in shame, stigma, and exile from family and community Delhi Experience l Came to Delhi to escape the stigma of HIV diagnosis l Lived as a beggar until health deteriorated Ashram Intervention l Medical care provided, including admission to the private hospital l Counselling provided on HIV status l Love, care and acceptance in community Medical Summary l Age: 33 l HIV Transmission Route: sexual l Diagnosis: HIV with chest infection, suspected pneumonia or TB. Test results pending. l Prognosis: Undetermined a biological agent who constitutes a threat to humans, a potential danger, risk, harm Bureaucrats 56 57 OBSERVATIONS There are many factors that lead to individual destitution. A child born into an impoverished family in a rural village may have little chance of proper nourishment during their critical developmental years, stunting physical growth and mental development. Living in a small crowded hut without proper ventilation and indoor cooking compromises respiratory health from birth. The child's lack of education is often directly linked to child labour of economic necessity for the family. Healthcare is often inaccessible, due to physical distance from the nearest provider, or simply not sought due to lack of understanding about health or fatalistic acceptance of the ubiquity of illness. Families fall apart due to sickness and death. Escape from these hardships and the dream of making money lures millions to India's big cities every year. Their urban experience varies. Some find jobs, but are grossly underpaid or forced to work in hazardous environments which compromises their health. Many are exposed to the cheap thrills of readily available drugs and inexpensive sex workers. Others work hard and succeed for a time, until a health crisis occurs. Either an accident or contracting TB or HIV leads to their physical decline. In spite of existing health infrastructure in Delhi, many people are not receiving even basic care. Many destitute people do not know that free health care is available to them from government hospitals. Those that do seek health care are often intimidated by large public health facilities, or they fear discrimination by the medical professionals. Often destitute people are not allowed admittance to hospitals due to medical staff unwilling to or simply too busy to help. For those who do find their way to medical care, many are sent away with a simple prescription for antibiotics, in spite of presenting serious symptoms. A thorough examination is a rare occurrence, and screening of this vulnerable population for HIV or TB is rarer still. Those diagnosed with HIV or TB are stigmatized and often denied treatment. Mentally challenged people have nowhere to go. There is insufficient staffing at government-run hospitals not allowing doctors enough time to adequately assess their patients. Outside of the government medical system, various organizations and unscrupulous “doctors” exploit the illnesses of poor people. Charitable organizations working among this population are not consistently screening for HIV and TB or effectively counseling about HIV prevention or living with HIV. Some substitute therapy programs actually result in new users becoming addicts of substitute drugs, as screening and drug use testing was not be done as part of admission to the program. Opiate pharmaceuticals can easily and inexpensively be procured from unscrupulous chemists, and are often mixed into cocktails with substitute drugs. Free needle programs get close enough to the addicts to distribute needles, but safe mode of injection and HIV transmission messages are not being heard and understood by the often-illiterate users. Medical assessments of free needle and substitute drug program recipients are not being done, so abscesses, HIV and TB are undetected and untreated. For many of the destitute, the national DOTS program has not led to successful TB treatment. Homeless people, who typically do not have a fixed address, are not able to enroll in the program. For those who do manage to enroll in the DOTS program, destitute people are often scared away by intimidating paramedical staff.The three times-a-week medication protocol is often insufficient medication for the typically advanced TB of the destitute patient. Guidelines of the DOTS systems are widely disregarded by practitioners and paramedical staff. Even in the government-run TB hospitals, patients are not actually observed taking medication. Lapsed patients are not followed up by counselors or motivators. Medication is not provided for multi-drug resistant TB. Co-existing illness in TB patients are often overlooked. Roughly 30% of TB patients also have lung function derangement, for which they require supportive treatment.There is no provision for this additional treatment in DOTS. Much of the burden of disease that afflicts urban destitute people is preventable or easily treated if diagnosed promptly. HIV education and prevention messages are not effectively reaching the migrant and 58 illiterate population before they engage in risky behaviour. These communication campaigns are typically existing only in central areas and do not reach the peripheral areas. HIV prevention and safe sex messages are sometimes heard in red light districts, but seldom among the informal sex workers in other parts of Delhi. Language barriers and illiteracy among the migrant population prevents comprehension of traditional media, such as pamphlets, posters and billboards. The link between HIV and TB is strong. Among the destitute, we commonly see that TB steals longevity from its survivors, due to late diagnosis and intervention. People with HIV typically die of complications of TB. Among the destitute population, constant vigilance and screening is not done by medical professionals or health workers who come into contact with patients. HIV testing is done inconsistently and sometimes test results are not even communicated to the patient. Proper counseling is not always completed. Many NGOs have taken on the task of early diagnosis, but their impact has been nominal among the destitute population. 59 RECOMMENDATIONS As these personal histories reveal, many challenges remain in addressing the health needs of the destitute in Delhi, particularly in relation to HIV and TB.The following recommendations are offered as a starting point. Community Caring for the destitute person's immediate medical needs is just the first step in a personal transformation process that includes physical, social, and vocational rehabilitation. This process requires time, and a supportive environment and long-term relationships. Membership in a community where human dignity is restored and every person is valued and seen as having something important to contribute is key to igniting the spark of hope in each individual. Perhaps more than anything else, destitute people need community. Their needs are not confined to medical treatment, then discharge. They need somewhere to rehabilitate, to live. They are in too weak a state to survive on the streets of Delhi, too weak to avoid old habits. They need education, vocational skills and economic opportunity. They need to be empowered to “live” not just to survive. A healthy lifestyle with good , hygiene, food safety, good nutrition, and caring for one's health needs to be modeled and experienced before it can be adopted. As Sewa Ashram expands, we are shifting our treatment approach. Understanding the need to be close to where the destitute live, we hope to open a small clinical facility in Delhi, among the community we serve in Yamuna Bazaar. This clinic will provide medical care for new patients and increased opportunities for screening of HIV and TB among the wider population. It will also enable us to have a consistent presence in the area, which is vital to building trust and long-term relationships with the people we serve. Patients leave Sewa Ashram before their treatment is completed for a variety of reasons. By being resident in the community they often return to, we hope to find TB treatment defaulters more quickly and continue treatment for patients who no longer live at Sewa Ashram. Secondly, we envision creating a village outside of Delhi, where vocational training and various economic opportunities could be carried out for those patients ready to try to build a new life for themselves. This model will essentially restore people who have been broken by their urban experience back to the traditional social structure of village life.This village–like community will continue to share the ethos of Sewa Ashram: that of caring for each other, seeing and responding to human need around us, and working together in a community. TB Treatment Approach at Sewa Ashram In treating TB, we divert slightly from the national DOTS program recommendations which calls for medicine three days a week. We provide daily medication with nutritious food and a peaceful environment that provides rest for the patients. Because so many of our patients are severely undernourished, diagnosed late, often with multi-system TB and secondary diseases, we have found that daily treatment is more effective. Patients are also more confident of the treatment when they are getting daily medication. Additionally, we closely monitor patient progress with monthly sputum tests and lung x-rays during the initial intensive phase of treatment. The same tests are done every two months during the maintenance phase of treatment. Based on previous exposure, past defaults, associated HIV, and how long it has taken for the patient to come from initiation of treatment up to symptom relief, we may extend the period of treatment beyond the typically recommended six months to nine months. Finally, we have a pulmonary rehabilitation program to improve lung function. These simple exercises have been merged with daily yoga sessions to improve lung function in our TB patients. Outreach at local TB Hospital Additionally, we have an outreach program to Rajan Babu Tuberculosis Hospital (RBTB) in Delhi. This large facility has many destitute patients who are undergoing the intensive phase of TB treatment, but have no one to care for them. One of our social workers daily visits them in the hospital. They ensure medicines are taken, provide food, clothing, and personal care.These patients will often come to Sewa Ashram to complete their TB treatment once they are discharged from RBTB hospital after completing their two month intensive phase of treatment. Rationalization of the National DOTS program To effectively treat TB among the destitute, the existing DOTS program needs to have added flexibility to adapt best practices and new ideas. Private physicians and NGOs should be incorporated into the DOTS program on a larger scale.The treatment protocol needs to account for differing medication needs based on the severity of illness. Counselors and Motivators working in DOTS need to be inspired or given incentive to aggressively pursue defaulters and held accountable for those in their care. Regular patient assessments should be done by a physician to manage the secondary illnesses associated with TB. Screening programs among vulnerable populations should be a higher priority, and HIV screening could be done at the same time. Upon completion of therapy, a final chest x-ray should be taken to confirm that the treatment was successful and additional follow up done after 3 months to reduce chance of relapse. The program currently lacks any provision for treatment of multi-drug resistant TB. ART among the Destitute In treating HIV, we typically don't start our patients on anti-retroviral therapy. Destitute people, usually with very limited education and understanding of disease need to go through a learning process, which typically takes years. First, they need to understand what HIV is and what this means for them. A simple explanation of their diagnosis and its implications often needs to be repeated many, many times before understanding occurs. When there is a need to take ART, we need to be sure that patient is in a social, mental, and economic position that they can take it for the rest of their life. Delivering Basic Healthcare Many of the health issues seen among destitute people could have been prevented or treated inexpensively if properly detected at an early stage. A network of small community health centers located near homeless and destitute people and in slum communities could be an important first line for early detection of HIV and TB. These small clinics or health centers could also serve as an important center for education of vital public health messages. A franchised model of healthcare could be utilized to provide economic incentive to health professionals to work in this challenging environment, utilize economies of scale in procurement and distribution, and to quickly scale up an extensive network that reaches the most vulnerable population. A similar type of intervention in rural areas could be used to provide improved access to healthcare to help prevent the illness and death that is often a contributing factor in migration to the city. These centers could also provide a local public health education element, teaching the importance of clean water, proper hygiene, and detecting and addressing rampant undernourishment in children. Increasing Effectiveness of Public Health Messages Many of the current public health messages are missing the very people who most need to hear them. We 60 61 need a burst of creativity to effectively reach the most vulnerable population. Messages must be prepared in the vernacular language of the streets, in the languages of the migrant populations, using radio, drama, and other forms of media. Ethnomusicologists and songwriters must spend time with this population and prepare jingles that people will understand and remember. Community radio stations focused on vulnerable populations need to be set up, using radio as a way to disseminate life-saving messages about safe sex, condom usage, HIV transmission, and the importance of TB and HIV screening. Positive role models and the example of peers who have broken the destructive cycle of their addictive lifestyle should be the ones to reinforce the importance of good lifestyle decisions, and to counsel on what living with HIV means. Inspiring Compassion among Medical Professionals Too often the healthcare of a destitute person is compromised by the uncaring response of a medical professional. We need to seek ways to inspire the health community to true compassion for those who most urgently need their help. Continuing education for health professionals to sensitize them to the needs of the destitute, to recognize discriminatory behavior in themselves and their colleagues and honest enforcement of anti-discrimination policies are all needed. As part of a “Journey to Greatness” initiative, Unilever required their management trainees to do three weeks of service at various charitable organizations. Those who served at Sewa Ashram described their experience as life-changing, as they learned to see destitute people as people just like themselves. Their time working among the poor humanized them and made them better managers. Imagine what effect mandatory service for the poor, as a part of medical training, would have on a new generation of medical professionals. Addressing Root Causes I read a very clarifying article in The Hindu newspaper: “Today, hunger and deprivation affect about 260 million people in the country. India is home to 40 per cent of the world's underweight children. Iron deficiency anaemia is estimated to affect 75 per cent of children under the age of five; 57 per cent in the same group suffer from vitamin A deficiency. Under-nutrition in women of reproductive age contributes significantly to child hunger. Consequently 30 per cent of babies weigh less then 2.5 kg at birth leading to multiple handicaps in later life, including cognitive ability.”This is what lies at the root of all these stories, or case studies, if you like. Without taking these numbers in consideration and without addressing the rootcauses of the spread of HIV/TB among the poor, we merely dress the wounds caused by the crushing wheel of injustice. Like Bonhoeffer said: we have, instead, to throw a spoke into the wheel itself to prevent it from crushing the poor, the small farmer, the labourer, the little boy who serves you chai. It is our earnest hope that these profiles inspire a greater sensitivity to the challenges faced by those who are sick, destitute, and homeless. Sewa Ashram is just one of many organizations and individuals working to improve the lives of destitute people in Delhi. Together, let's seek solutions that honestly face the issues of discrimination, inaccessible healthcare, and the root causes of poverty. Thank you for reading the stories of our patients. 62