"I love to see my parents and other relatives but I have to suffer humiliation if I go to their homes," she complained. She said that her relatives do not let her son touch and play with their children and they even fear to sit near them. [break]
Though Subedi works for Sneha Samaj, a non-governmental organization that creates awareness about HIV positive, she fears to disclose her real identity in public.
"Due to the fear of being ostracized by the community I live in, I do not want to reveal my HIV status," she said. She said that her family could be expelled from the rented room, if her landlords come to know about her infection.
She has not even disclosed at her son´s school that he has HIV positive. Generally, Schools in the capital do not admit children having HIV infection.
Her early experience about the discrimination is even more dreadful.
Subedi had arranged marriage at the age of 12 with a 30-year-old man who worked in Mumbai.
After six years of their marriage, the couple had a son. But one day her husband came home from Mumbai in an ailing condition.
Their ailment was diagnosed at the Gandaki Zonal Hospital. Due to shame and discrimination of the society he used to hide in jungle the whole day and returned home only in the evening. "I did not hear about the disease until then," she added.
When her husband died, no one came to attend his funeral procession. His dead body lay at their home from morning till 7 o´clock in the evening. Even her close relatives refused to touch the dead body. Subedi gathered 30 people, including her relatives paying them Rs 1,000 each to remove the dead body.
The dead body was buried against the Hindu tradition of cremation.
She came to the capital to get rid of the discrimination she faced in her village. "Even my parents hesitated to protect us," she complained. Subedi has been taking antiretroviral treatment (ART) for the last five years and her 14 year-old son since 2006. She said she found no difference in the way people treated HIV positive patients in the capital than her village. "I am still hiding my status," she said.
Apsara Karki, the program director of Punerbal Plus said that the general perception about the HIV in the society has not changed much despite that donor agencies and the government investing a lot in awareness programs. She said that parents in the capital have been compelled to hide their children´s HIV status to be able to send them to school.
"Parents of the normal children will not send their children to the same school where HIV infected children study," she said. Some people wrongly believe that the disease can be transmitted through casual contact. Due to the failure of the government and social organizations to educate people about the disease, infected people continue to be ostracized in the society. The organization said that it has admitted 13 children in government schools, without disclosing their HIV status.
Meera Kunwar, general secretary of National Association of People Living with HIV/AIDS (PLHA), said infected people have been compelled to live in the capital hiding their status. "People have to face rejection by families and friends and by the society if they have HIV infection," she said, adding, "There is high a chance that an HIV infected person would lose a job if the employer knows about the disease. No one gets job by revealing his/her HIV status."
Hundreds of HIV infected people have migrated to the capital to avoid the stigma they face in their native places. She said that the stigma would persist in the society until the general conception about the disease change.
HIV positive a clinically manageable disease
Dr Anup Bastola, Dermatologist at Sukraraj Tropical and Infectious Disease Hospital (STIDH)
How can we eliminate existing social stigma attached to HIV AIDS?
Like diabetes and hypertension, HIV, too, is a clinically manageable disease. The HIV virus gets transmitted by sexual contact with HIV infected people, sharing needle with them, transfusion of the infected blood and from infected mother to child. A lot of people wrongly believe that the disease can be transmitted through casual contact like touching, using same toilets and sharing same drinking glasses. HIV cannot claim life if it is diagnosed at an early stage. We can avert AIDS related death if the disease is diagnosed early.
Infected people can live healthy life for years by consuming medicine, which is also free of cost. Unlike other disease, patients do not have to abstain from eating different kinds of food. They can eat whatever they wish. Some infected people have gone so far as to say that their lives have become ordered and disciplined after they got infected. They have become more health conscious and stopped taking drugs and other hazardous things.
What should be the role of the government and social organizations to reduce the entrenched stigma?
The government and non-government organizations working in the HIV sector have a great role to play in reducing the existing stigma and discrimination. They should launch awareness programs to change general conception about the disease. The donor agencies and the government, however, have been investing a lot in the HIV sector but they have failed to create awareness about the disease. Existing awareness programs seems less effective to combat the entrenched stigma. HIV infected people need love and support of the family and society. Due to hate, humiliation from family, friends and the society, a lot of infected people suffer from depression. They even stop taking medicines regularly and come to hospital in serious condition. The government and social organizations should sensitize people that HIV positive is like any other disease and can be managed clinically.
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