Stories from the frontline: Northern India
Simrat was the youngest child in the family. His parents recall that he was not very keen about going to school but very good at learning technical jobs. Early in his teens he started working as a mechanic at a nearby bicycle repair stall. By the time his parents realized, Simrat was already addicted to drugs. He started to lose weight and one day he developed a big abscess on his backside. He was admitted to the local government hospital, where he tested positive for HIV. The doctors refused to drain the abscess and he was forced out of the hospital. His parents tried to persuade doctors in one or two private nursing homes to admit him for treatment but no one agreed. His elder brothers and sisters-in-law also refused to let him enter the family home. He was forced to stay in a distant room in the family farmhouse, where his aging parents provided him food and care. Simrat died a few weeks later.
Vartika teaches science in a reputed college in Kapurthala district, Punjab. When her husband died of AIDS two years ago, she and her nine-year-old son had already been tested positive for HIV. A widower businessman with grown up children agreed to marry Vartika on the condition that she left her HIV positive son with her parents. As a stressed out mother she had no option but to abandon her only son. When asked why he accepted Vartika but refused to take in her son, her husband curtly replied, “I needed a woman to keep my household going, why bother about a boy who is going to die sooner or later anyway”.
Simrat and Vartika are just two of the many people living with HIV/AIDS in Punjab, one of the most affluent states of the country. The state is described as ‘food bowl of India’ and has the highest per capita income in the country, next to Goa. The state is currently grappling with a declining male-female ratio due to prevalence female foeticide, made possible by blatant misuse of ultrasound scan machines. This mindset is also reflected in the way the community in this state treats women infected with HIV.
Dr. Rakesh Bharti of the Bharti Derma Care and Research Centre at Amritsar counsels three hundred families, which look after HIV positive relatives. According to Dr. Bharti in-laws cast out 99% of the widows of people who have died of AIDS, and even their own parents are not willing to accept them. To add insult to injury the in-laws refuse to part with the male children, irrespective of their HIV status.
He recalls the dilemma of a mother whose eldest son died of AIDS. The family had kept it a secret, even from her un-educated daughter-in-law. The parents of the widow wanted the old woman to marry her younger son to their widowed daughter (whose HIV status was unknown) according to the tradition in the community, but for obvious reasons she would not accept. The fate of the young widow is not known.
Dr. Bharti has noticed a clear-cut pattern, which families follow when their members are chosen to receive ARV treatment. Top priority is given to adult males who are the bread winners of the family, followed by male children, then comes the turn of the mother and last of all it is the female children who have access to antiretroviral treatment (ARVs).
Families have to pay a very heavy price for arranging ARV treatment, and usually the cost is not just monetary.
Varinder works for a national insurance company as a clerk and is currently receiving ARV treatment. When asked how he was meeting the cost of drugs from his limited income he explained, “First I gave up smoking, then the family stopped going for outings on weekends”. After a pause with tears held back he said, “Then we stopped celebrating birthdays in the family”.
Another HIV positive professional couple from the sleepy town of Ajnala, twenty-four kilometers from Amritsar has to shell out Rs. 2400 (US $ 54) every month towards the cost of anti-retroviral drugs (ARV). Their only daughter, wanted to study medicine but the cost of drugs leaves them with no spare money to pay for her tuition. Instead she has opted to study humanities.
Lakhbir tested HIV positive in October last year and was taking ARVs until June this year. Then he suddenly disappeared. In September his wife contacted the doctor to see if she could return some of the drugs, which were lying unused. “What happened to Lakhbir?” the doctor enquired. “He committed suicide”, she replied. The debt incurred in paying for the cost of the drugs was mounting every day and it cost him his life.
Dr. Bharti is also worried about the readily availability of HIV testing in the State, among untrained staff. Often, people working in clinical laboratories in rural areas people don’t possess the necessary skills to appropriately communicate the results of tests to individuals or their families. Dr. Bharti knows of at least one person who committed suicide soon after the laboratory technician announced the result of his test to him. The Zonal Voluntary Counseling and Testing Centre at Amritsar also lacks skilled staff and often hands over the results in unsealed envelopes.
Yet another source of concern is the insensitive attitude of doctors towards people living with HIV. Obstetricians refuse to conduct deliveries for mothers living with HIV and the surgeons refuse to operate. Patients have to run from pillar to post to seek medical care.
In an otherwise prosperous state, 6% of people live below poverty line. There are large numbers of people living with HIV who cannot afford ARVs when they need them. Public hospitals have little to offer beyond HIV testing. It is not known when and how the ARV drugs will reach these poverty stricken patients. How we keep them alive until then is a big question.
HDN Key Correspondent
Email: correspondents@hdnet.org(December 2004)
Vartika teaches science in a reputed college in Kapurthala district, Punjab. When her husband died of AIDS two years ago, she and her nine-year-old son had already been tested positive for HIV. A widower businessman with grown up children agreed to marry Vartika on the condition that she left her HIV positive son with her parents. As a stressed out mother she had no option but to abandon her only son. When asked why he accepted Vartika but refused to take in her son, her husband curtly replied, “I needed a woman to keep my household going, why bother about a boy who is going to die sooner or later anyway”.
Simrat and Vartika are just two of the many people living with HIV/AIDS in Punjab, one of the most affluent states of the country. The state is described as ‘food bowl of India’ and has the highest per capita income in the country, next to Goa. The state is currently grappling with a declining male-female ratio due to prevalence female foeticide, made possible by blatant misuse of ultrasound scan machines. This mindset is also reflected in the way the community in this state treats women infected with HIV.
Dr. Rakesh Bharti of the Bharti Derma Care and Research Centre at Amritsar counsels three hundred families, which look after HIV positive relatives. According to Dr. Bharti in-laws cast out 99% of the widows of people who have died of AIDS, and even their own parents are not willing to accept them. To add insult to injury the in-laws refuse to part with the male children, irrespective of their HIV status.
He recalls the dilemma of a mother whose eldest son died of AIDS. The family had kept it a secret, even from her un-educated daughter-in-law. The parents of the widow wanted the old woman to marry her younger son to their widowed daughter (whose HIV status was unknown) according to the tradition in the community, but for obvious reasons she would not accept. The fate of the young widow is not known.
Dr. Bharti has noticed a clear-cut pattern, which families follow when their members are chosen to receive ARV treatment. Top priority is given to adult males who are the bread winners of the family, followed by male children, then comes the turn of the mother and last of all it is the female children who have access to antiretroviral treatment (ARVs).
Families have to pay a very heavy price for arranging ARV treatment, and usually the cost is not just monetary.
Varinder works for a national insurance company as a clerk and is currently receiving ARV treatment. When asked how he was meeting the cost of drugs from his limited income he explained, “First I gave up smoking, then the family stopped going for outings on weekends”. After a pause with tears held back he said, “Then we stopped celebrating birthdays in the family”.
Another HIV positive professional couple from the sleepy town of Ajnala, twenty-four kilometers from Amritsar has to shell out Rs. 2400 (US $ 54) every month towards the cost of anti-retroviral drugs (ARV). Their only daughter, wanted to study medicine but the cost of drugs leaves them with no spare money to pay for her tuition. Instead she has opted to study humanities.
Lakhbir tested HIV positive in October last year and was taking ARVs until June this year. Then he suddenly disappeared. In September his wife contacted the doctor to see if she could return some of the drugs, which were lying unused. “What happened to Lakhbir?” the doctor enquired. “He committed suicide”, she replied. The debt incurred in paying for the cost of the drugs was mounting every day and it cost him his life.
Dr. Bharti is also worried about the readily availability of HIV testing in the State, among untrained staff. Often, people working in clinical laboratories in rural areas people don’t possess the necessary skills to appropriately communicate the results of tests to individuals or their families. Dr. Bharti knows of at least one person who committed suicide soon after the laboratory technician announced the result of his test to him. The Zonal Voluntary Counseling and Testing Centre at Amritsar also lacks skilled staff and often hands over the results in unsealed envelopes.
Yet another source of concern is the insensitive attitude of doctors towards people living with HIV. Obstetricians refuse to conduct deliveries for mothers living with HIV and the surgeons refuse to operate. Patients have to run from pillar to post to seek medical care.
In an otherwise prosperous state, 6% of people live below poverty line. There are large numbers of people living with HIV who cannot afford ARVs when they need them. Public hospitals have little to offer beyond HIV testing. It is not known when and how the ARV drugs will reach these poverty stricken patients. How we keep them alive until then is a big question.
HDN Key Correspondent
Email: correspondents@hdnet.org(December 2004)
posted by AIDS-Care-Watch at 3:36 pm
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