September 10, 2012
September 10, 2012
KATHMANDU, NEPAL -- The narrow alleys of the Basundhara neighborhood in Nepal’s capital city were lashed by heavy rain as Ramesh Biswokarma, 33, struggled to negotiate the crowds. He was caught in the sudden downpour while carrying his howling four-year-old son, Abhishek, on his back. Biswokarma was late for work.
He is a counselor at Prerna, a local NGO working for the right of HIV positive people.
Last year, Biswokarma’s wife, Parmila, died of AIDS. Today, he is alone, taking care of Abhishek and his two other children, Isha and Kajal aged 8 and 6.
Abhishek, the youngest, is a skinny, bony little boy with a big belly. Like his father and siblings, he too is HIV positive. The children, Biswokarma admits, do not yet know their mother is dead. Isha thinks her mother is in the hospital. Kajal repeatedly asks when she will return home. Biswokarma sighs and says she will return home soon. "I don't know what the future looks like for my kids born with HIV," he says.
Abhishek, Kajal, and Isha are among thousands of HIV positive children in Nepal. To date, statistical reporting and reliable testing have impeded accurate population estimates. In 2006, UNAIDS estimated that there were approximately 75,000 HIV positive people in Nepal, 20 percent of which were estimated to be children. The disease has orphaned another 13,000 Nepali children in the last five years. As a result of strong cultural stigma, HIV positive children here are routinely denied educational opportunities. As a result, many families lie about their children's status to avoid being isolated from family members and rejected from school admissions.
Educational Opportunities Denied
Five hundred miles away, Dhanmati Luhar faces a similar situation. She is raising her 4-year-old HIV positive grandson in Kanchanpur. Ramesh Luhar doesn't know his parents died of AIDS a year ago. "I don't mind in taking his care,” Luhar says. “But throughout the day I live in worry until my grandson arrives home and that nobody knows he is HIV infected.”
Luhar admits that she has been covering up her grandson’s condition. "If I tell the school that my grandson is suffering from HIV, the teachers will evict him from the school. And if I inform about his condition to the society, people will despise him," she says.
Padam Bahadur Chand, director of National AIDS and Sexual Disease Prevention Center agrees that HIV positive children do not receive sound educational opportunities. "Many HIV infected children have been deprived of education while other children of their similar age go to school regularly. They do so saying that the HIV positive kids will die very soon and think that they don't need education,” he says.
Around the country, the situation is the same. Laxmi Lama, 28, of Hetauda, enrolled her HIV positive son in a local school but did not reveal that he is HIV positive. “What to do? No school agrees to admit once I reveal that my son is HIV positive,” she says. School authorities did not discuss their rationale for denying admission to HIV positive children, but transmission and safety issues were among their concerns.
With few educational options, many families choose to keep their status a secret. In Kanchanpur, only Luhar and some of their close relatives know that Ramesh is HIV positive. Even Ramesh does not know his own condition.
Social Stigma Affects HIV Positive Families
Like many Nepalis, Biswokarma moved to India at a young age in pursuit of a high paying job. In 1996 he moved to New Delhi to work as a laborer in a steel factory. After a few months, he met Parmila, who worked at a massage parlor. They were married in 2000. When Isha was born two years later and Kajal followed soon after, he began to have difficulties making ends meet.
With another baby on the way, Biswokarma realized the family would have to move back to Nepal, where the cost of living was lower. He made just over $100 USD per month in India. "So I sent my children and wife to Nepal to ward off financial crisis and I went to Mumbai in search of a high-paying job," Biswokarma says.
He had been in Mumbai for four months when he learned that his wife was ill. When he returned to Nepal he admitted is wife into Kathmandu’s teaching hospital. Parmila was suffering from diarrhea, headaches and fever. When doctors performed a blood test, Biswokarma says he was shocked to learn his wife was HIV positive.
She died one month later with a final confession – she had been a sex worker in India before they married. "I felt I was ruined after she died and thought my life would never be the same," he says.
According to a UNAIDS survey at least 10 percent of the 2 to 3 million Nepali migrants working in India are HIV positive. "India is the source of HIV/AIDS in Nepal as many Nepalis working in India return being the victims of HIV/AIDS. Later they pass onto the virus to their spouses," says Chand of the National AIDS and Sexual Disease Prevention Center. "If the HIV accelerates more rapidly through the infection of migrant laborers, the proportion of children orphaned could grow exponentially."
After Parmila's death, Biswokarma and his children were tested. They had all been infected. "Though I caught the disease, I had prayed for my children. But the deadly infection did not spare them," he says.
The trials of raising an HIV positive family alone are compounded by the social stigma and isolation they face. Biswokarma says he thought his parents would help him raise his children once his wife died, but they refused. "Not only did they refuse to help me, but [they] also they evicted us from the house," he says.
Homeless and HIV positive with three children of the same status, Biswokarma found the Manisha Singh Rehabilitation Center, MSRC where he and his children have lived for the last year. "It hurts when my kids ask me to take them home. I cannot do anything for them," he says.
Number of HIV Positive Children Increase, Care Options Do Not
Organizations working to control HIV/AIDS in Nepal report that the number of HIV infected children in increasing. "Our survey conducted from December 2005 to May 2007 showed the number of HIV positive children increased by 210.14 percent," says Dr. Giridhari Sharma, program director of Family Planning Association of Nepal, FPAN. "If this continues, it will soon take an alarming form."
UNICEF, UNAIDS and USAID estimate that annual deaths from AIDS have increased from 3,000 in 2003 to over 6,000 in 2007, the most recent year for which data is available. In the absence of effective care and treatment 10,000 to 15,000 are expected to die annually in the coming years. "As the number of adults dying of AIDS increases, parental care will elude children and they will be deprived of many basic rights such as shelter, food, health, education and care," says Sharma.
Although the number of HIV infected and affected children is on the rise, programs, aid and government support have not increased in equal measure. Treatment, care, support and rehabilitation are limited here, says Sanu Giri, program officer of Child Workers in Nepal Concern Center, CIWIN. "Efforts are focused on prevention and awareness only," he says.
As a result, treatment and rehabilitation centers are few. Biswokarma and his children managed to get shelter at MSRC. But they will have to leave the center in a few months, which as become a source of constant worry for Biswokarma. "I can live at this center only for eight [more] months and where will I go after that? If I could find a place to keep them [for] their lifetime, I could die in peace," he says.
"We have to help other HIV positives as well," says Dhriraj Shinkhada, program project manager of MSRC of putting time limits on residents. "Our resources are not enough to keep all of them."
Sangeeta Thapa, of Nabikaran Plus Children Home, says there are three privately run rehabilitation centers in Nepal for the HIV affected children.
But many activists working for HIV people in Nepal say that the HIV positive population cannot be cared for with temporary programs and minimal treatment and support. “What is the use of keeping them at centers for a short period?” Sharma says. But few other options are available, especially for HIV positive children that are routinely denied housing, education and treatment.
R.K. Singh, public health inspector of AIDS and Sexual Disease Prevention Center, a government body says, "Privately opened care centers are providing rehabilitation to HIV positive children." He acknowledged that the government has not prioritized the treatment of HIV positive children here.
But many believe sending HIV positive children to permanent rehabilitation centers may not be the right solution either. Singh says, "Though these facilities help children overcome difficulties, it will not put an end to their problem." Singh stressed the government’s efforts to create awareness among the public so that HIV positive children may be able to return to their families. "Providing community-based care for children is the best alternative to this problem. The main challenge we have is to change the social attitude of the local community," said Singh.