PICS: BIKRAM RAI
In addition, ongoing negotiations between Europe and India on free trade are going to make anti-retroviral drugs much more expensive, putting it beyond the reach of the poorest infected people in Nepal. An average patient today has to spend Rs 2,600 per month for the drugs, and this amount will increase four-fold if the agreement goes through.
"The head of the EU mission in Nepal told us during our demonstration on 3 February that the agreement will have no impact on India's capacity to produce cheap generic medicines, but we don't believe it. If Europe succeeds, the health of millions across the developing world will be at risk," says Rajiv Kafle, a HIV positive activist who runs Navakiran Plus, a hospice for HIV patients.
In two weeks, the pharmaceutical giant Novartis is set to challenge a part of India's patent laws which allows Indian companies to produce cheap versions of generic anti-retroviral drugs. The Novartis vs India case heads to the Indian Supreme Court on 28 February.
Even though fewer people are being infected in Nepal, the number of people with HIV is expected to grow five-fold to 200,000 by 2020. At present most infected people are in the 15-49 age group, male migrant workers make up nearly one-third of all infected people, and 25 per cent are women.
"The decline in the HIV prevalence rate is a fantastic achievement and Nepal is likely to meet the HIV-related Millennium Development Goals," says Nafisa Binte Shafique UNICEF's HIV/AIDS chief.
Over the years, new prevention programs and treatment and care facilities have been set up and the biggest achievement has been in setting up anti-retroviral treatment (ART) centres. More than 6,000 HIV positive people currently get treatment in 36 centres around the country.
"The ART program has been very successful in stabilising the infection and the prevalence rate has dropped in high risk groups," explains Ramesh Kharel, director of the National Centre for Aids and STD Control (NCASC).
However, money for ART is underutilised or wasted, and ART centres in rural areas still do not provide quality service. "At a time when basic healthcare services are missing in many parts of the country, ART centres have a mixed record," explains Madhav Bhandari of SPARSHA Nepal, which works with HIV infected people.
Despite improved government spending in the health sector, allocation for HIV related projects is still low. Overcoming red tape in budget allocation is a huge obstacle. "The budget is first passed around from one ministry to another and by the time it reaches the patients there is not much time left," says Bishnu Sharma of Richmond Fellowship, which works in drug and alcohol awareness and rehab.
"There is still much work to be done to protect the rights of people infected and affected by HIV, and individuals at risk," says Shoko Noda, Nepal country director for UNDP. The other challenge has been cultural stigma and discrimination within families, in schools and workplaces against those living with AIDS. Even in high-risk groups like sex workers, awareness about HIV transmission does not always lead to behaviour change in use of safe sex practices.
Injecting drug users are reusing syringes even if they know about the dangers. "Unsafe sex is one of the most common ways of transmitting the virus," says Sunila Baniya at Punarbal Plus, "but there is so much stigma attached to sex, especially outside of marriage or outside of heterosexual relationships that it becomes very hard for people to open up about high-risk behaviour."
The condition is worse for children of HIV positive parents who are also infected (see box). Says Baniya: "we take care of children who can't go to school because they or their families are infected."
In a society where people with HIV/AIDS are ostracised even by family members, refused treatment by doctors and stigmatised in the classroom, Punarbal Shikshya Sadan is a unique school where infected children are treated like everyone else.
Started five years ago, the school in Sitapaila gives priority to children of HIV positive parents and children with HIV/AIDS and they can study without worrying about bullying or discrimination.
Sunila Baniya (pictured, left) and Apsara Khadka started Punarbal Plus ('renewed strength' in Nepali) after working as counselors for HIV positive people. "We found that schools turn away children just because of their or their family's HIV status," explains Baniya, "since no one else wanted them, we decided to open a school for such children."
Punarbal started with 35 students of which more than half were HIV positive and in the beginning struggled to gain acceptance in the local community as teachers, staff and students faced constant harassment. Today, the school runs from nursery to third grade for 65 students.
The school is now so popular parents want to enroll even non-infected children. Baniya, Khadka and the staff are trying to place Punarbal students into 'regular' schools as well. "We do not want to expand classes beyond grade five, because we want to eventually integrate our students into mainstream schools," explains Baniya.
But so far only one student has been admitted and Khadka is distressed at the way schools are refusing to cooperate because other parents threaten to take their children out if they admit HIV students. Punarbal also has a hostel for 27 children orphaned by AIDS from western Nepal.
Punarbal relies on donations, but money is always short. For now, Khadka and her colleagues have decided to cut costs by removing free lunch. She says: "People praise us for our good work but very few are willing to support us financially."
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