‘HIV does not kill people, but the stigma does’. Stigma and discrimination refers to the prejudice and misbehavior with people living with HIV (PLHIV), further adding to their woes. Who else would know it better than 33 years old Tuka Devi (name changed), of Dadeldhura district in west Nepal.
She is one amongst the many people facing social stigma simply because she is living with HIV. Literate Tuka Devi was married off at the tender age of 16 years and she could not continue her studies because of her family’s poor economic condition. Her husband used to work as a labourer on daily wages at the local Jogbudha Market. He would also go intermittently to India in search of work as a seasonal worker and return to home after earning as high as Rs 10000.
In August 2008, he returned home empty-handed though he had worked for some months. He was sick and losing weight day by day and was taken to Jogbudha Primary Health Center for checkup. But within four months of medication he died in December 2008.
In the beginning, the cause of his death was not known. Later, it was found that he had been a victim of HIV. Tuka Devi bemoaned that the death of her husband was for her like drowning in the sea and there was no hope left in her life. “It was really a tough time and I barely managed to live through that nightmare. He was the single breadwinner for my family,” she shared tearfully.
Few months after her husband’s demise, Tuka Devi’s youngest daughter was also taken ill and the baby’s health deteriorated in the same manner as her father’s. Suspecting something wrong in the health condition of the family, Devi, along with her all family members, took the blood test. She and her youngest daughter were diagnosed to be HIV positive.
Tuka Devi was certain that the virus was transferred to her from the husband. She lamented, “My husband is no more but the miseries are left with us.” Once her HIV positive status was known, Tuka Devi’s father-in-law and neighbours started discriminating and misbehaving with her. She was catapulted into living an intolerably painful and hopeless life for not fault of hers. Bursting into tears, while narrating her sad story, she said, “In our society, Dalits (low caste) and women are at the receiving end due to HIV/AIDS. Whatever comes in life must be tolerated. So, did I.”
Once her HIV status was confirmed, Devi started to take medicines to increase her immunity. In the beginning she went through a hard time because of social discrimination coupled with her poor financial condition. Due to abject poverty, her other children also suffered from illness and were deprived of food and education.
“It was very difficult for me to arrange Rs. 4000 every month for medicines for me and my daughter.” Things however are slowly improving for her. For the last two years, she has been supported by Care Nepal, Dadeldhura to take a training course in tailoring, which has helped her earn some meager living, though not decent. Currently, she is taking her medicines regularly and is engaged in tailoring for her livelihood. This economic independence has increased her self-esteem and she has begun to involve herself in community discussion programmes.
Tuka Devi is not the only one suffering from such a situation. The condition of most of the HIV infected people is pathetic. However, women suffer more in the community once they are infected with HIV. The Nepalese society still has a very negative attitude towards HIV infected women.
According to the National HIV/AIDS and STD centre, women in the age group 15-45 years form 25% of the total 50,000 HIV infected population in the country. According to District AIDS Coordination Committee, Dadeldhura, a total of 132 people including 70 women were living with HIV in June 2013 in the district. A study carried out recently has revealed that in west Nepal, wives of migrant workers in India are at high risk of HIV/AIDS. People living with HIV (PLHIV) have bemoaned that the programmes of the government of Nepal are insufficient to combat HIV/AIDS.
Though Anti-Retro Viral therapy (ART) has been started, it is not accessible in all districts across the country. The Chairman of Dadeldhura District HIV/AIDS coordination committee, Deepak Kunwar assures that ART would be available soon in all districts across the country.
Chhatra Karki, Citizen News Service - CNS
13 August 2014
