Sunita, the widow of a migrant worker from Doti district, lives in a rented one-room, disgraced and friendless. She is waiting to die.
When we met Sunita last month, she had not eaten for three days. She had a terrible stomach ache and had lost her eyesight a few weeks before. But more than her fast-deteriorating health, Sunita worries about the future of her children. She lost her husband and two children to AIDS, and health workers doubt if she will live for much longer.
"I don't know what will happen to my children when I go," she sobbed. In a country where there is no social security net and social organisations are reluctant to provide care or support to orphans, Sunita's worry is not unusual. School is a fantasy for her four surviving children, aged seven, eight, 11 and 14. Sunita is desperately poor. "I am dying without even being able to repay the loan I took to buy a shroud for my husband two years ago," she says.
Here in Kailali district, HIV/AIDS is a taboo topic, and largely regarded as a disease that kills only "bad" people. The government's National Centre for AIDS and STD Control (NCASC) and about two dozen national and international organisations are working with different, specifically targeted groups-migrant workers, sex workers, intravenous drug users, rickshaw pullers and truck drivers. But many worry that such undertakings, which cost millions of rupees, are doing more harm than good. Their approach appears to be reinforcing the misconception that only people belonging to certain specified categories are in danger of contracting HIV. Infected people are reluctant to seek medical help because of the stigma that continues to be attached to the disease, and communities are find it hard to accept that any one of them could be in danger of contracting the virus.
Such attitudes affect women and children the most. Under its new community mobilisation programme, the Kailiali District Red Cross office estimates that one in 32 wives of migrant workers from the district could be HIV-positive. That figure could shoot up if more comprehensive studies are conducted and reluctant wives are persuaded to volunteer for tests. Red Cross data shows that sexually transmitted disease (STD) prevalence in the district is a fairly high eight percent.
Save the Children UK, which runs a community mobilisation programme in Achham to prevent the spread of HIV/AIDS, has recorded over 160 HIV/AIDS-related deaths in the district. The family structure the deceased men were supporting is alarming. All were married and on an adult woman here has four children on average.
As for children, there are no reliable statistics or even estimates of how many are affected by HIV/AIDS. Children of the sick have not been tested and there are no training or awareness programmes on how to take precautions. All families with identified AIDS deaths in Kailali related to us stories of younger children in their families dying. None of them was tested for HIV.
And no one has the time to think about the care of AIDS orphans. Prakash, also of Kailali, has seen HIV change his life dramatically. Both his parents are bedridden, and now the 14-year-old school dropout must not only care for them, but also feed his five younger siblings. His elder brother Hari, 15, has already migrated to India, following his father's footsteps. He will have access to a larger job market-and to the country with the largest absolute number of HIV-infected persons in the world. Medical prescriptions for Hari and Prakash's father state clearly that he is HIV-positive. Their mother, however, has not been tested, as the family is too poor to afford the Rs 34 bus fare she needs to travel to the nearest hospital in Dhangadi. In the house next to theirs, Man Kumari takes care of her five grandchildren, all AIDS orphans.
The government ignores this disturbing data and the official count of HIV/AIDS deaths in the country lingers at 143, with 1,940 individuals (1,382 men and 558 women) identified as HIV-positive. Government says NGOs exaggerate the figures to justify their presence in the districts. The huge mismatch between the official and unofficial tallies is a sign of just how disengaged the efforts to combat the epidemic have been in Nepal. Contrary to the stated intentions of the official strategy against HIV/AIDS, the problem is still treated in isolation from other development issues and practices like basic health services, economic upliftment and community mobilisation. The majority of people living with HIV are from the productive age bracket of 20-29 years-1,084 of the official count of 1,940 HIV-positive people are in this age group. When young, able-bodied people die, the burden of maintaining families falls on young children and old people, pushing Nepal's development a generation back, and having tangible effects on the national economy.
It's not just the government that is to blame. Charity organisations undertake awareness-raising activities only, and care and support packages for infected people and their families are almost non-existent. We found that most people with HIV were unaware about the status of their health and their sexual partners had not been encouraged to go for check-ups and testing. Infected people and their families were not provided counselling or trained in precautions. Mahesh Sharma, the Country Programme Manager for the UNDP-funded HIV/AIDS programme, said since care and support programmes require a long-term commitment and show results slowly, organisations are hesitant to take up the task.
And even raising awareness takes time. "I could have recovered by now, if only the daktarsab had given me injections," says Tika Ram, who believes his ailment is nothing more serious than tuberculosis. Health workers believe that he must have contracted the virus at least four years ago, and he has had regular sex with his wife since-their youngest child is only four months old. His wife, now the family's breadwinner, does not yet show signs of HIV/AIDS.
Nepal has all the socio-economic characteristics that aid in the rapid transmission of HIV-low literacy rate, poverty, gender inequality, poor access to utilities and unavailability of health services. But the well-off and privileged also are at risk. "Most of the boys in my class have sex regularly with their girl-friends and sex workers," a ninth grader in a private school told us privately.
A 1991 study conducted by the Resource Centre for Primary Health Care (RECPHEC) in the nine districts where the UNDP-funded Participatory Planning and Management of HIV/AIDS programme is implemented, revealed that 20 percent of young people, across class and caste lines, engaged in premarital sex and eight percent in extramarital sex. Virtually all knew of condom use as a preventive measure against HIV infection, but only a third used them regularly, and another third, occasionally. A quarter of those surveyed, mainly the unmarried young men, said condoms were simply not available.
It is obvious that all the good intentions and action plans will be useless if public attitudes do not change. As the government heads towards the end of its "Strategic Plan for HIV and AIDS in Nepal 1997-2001", the bureaucracy remains insensitive. Stigmatisation and victimisation are rampant, even among AIDS control officials. A government representative on the Kailali District HIV/AIDS Co-ordination Committee suggested to us that "exposing" people identified as HIV-positive, calling them "bad social elements" and cautioning the community to "keep away" would be the best way to prevent the spread of the virus. Some local governments have tried to include communities and people with HIV/AIDS in their fight against the virus, but they seem to have virtually no access to the policy-making level in the central government.