December 1, 2017, was the year’s World AIDS Day, and the theme this time was ‘Right to Health’. Only 54% of the adults and 43% of the children with HIV are receiving Anti-Retroviral Therapy (ART). The rest are out there – not diagnosed and not on ART. This is a challenge. Additionally, insurance companies often refuse to cover persons with HIV under their health insurance – even when they suffer from non- HIV related ailments. If we are hospitalised for an accident, we have medical insurances to cover our expenses. But an HIV patient gets no financial support from any scheme. To add to this, there is this insensitivity in our healthcare system and allied industries, whereby doctors, nurses, paramedics and health facilities are known to often refuse treatment if they come to know that a patient has HIV. This is the combination of stigma and discrimination, due to which the opinion (or fear) of one segment of society affects the survival of the others. Can we check our fears and knowledge at personal and professional levels, so that people are not denied the right to health?
A 13-year-old girl, both of whose parents had died, lived with her father’s sister, her husband and two children in a remote village in Karnataka. Her grief on the loss of her parents was mixed with the fear about what would happen to her. Who would care and protect her? Who would pay for her school and clothes? These are things that no child needs to worry about when they have their parents. One day, she fell sick and was taken to hospital by her father’s sister. The doctors did some tests and found out that the little girl was HIV-infected. Whatever little support the child had enjoyed after she lost her parents (in terms of living with her aunt) dwindled overnight.
At home, her aunt and her husband started to keep her away from their children. Every time she was sick, she was pushed away – and nobody came near her. The frequency of meals lessened, and she would often hear the fights between her father’s sister and her husband. He would charge, “Why does she have to live with us? She might infect our children. I have heard that even coughing and sweat spreads this disease.”
Their fear was real. She was miserable in their house. Fear killed the love they had for this orphan.
In a year, they had dumped her in an orphanage for children with HIV. They also discouraged her from visiting their home during holidays. The next year, they stopped visiting her in the orphanage. Among the 100 odd children in the orphanage, she was one of the few who had no visitors during the academic year.
The trauma of rejection by families initiates destructive behavior in children, especially in their adult lives, when they interact with people. Next to treatment, the biggest problem faced by persons with HIV/AIDS is the fear people have of being infected by them. They also shun them at every level – in personal and family relationships, and when it comes to employment opportunities.
Fortunately, the organisation that looks after her is exemplary. I am so happy there are a few such organisations. Some organisations which are doing great work with HIV/AIDS-afflicted children are: the Karnataka Health Promotion Trust (Karnataka, Tamil Nadu, Maharashtra and Andhra Pradesh), Snehagram (Tamil Nadu), Sneha Care Home (Karnataka), Bangalore School Sports Foundation (Bangalore), Carmel Jyoti (Manipur), Snehalaya (Maharashtra) and St. Catherine’s Home (Mumbai).
If you are an adult, and have a child (or children) in your life, please don’t leave them behind (by distancing yourself or deserting them, committing suicide or leaving them alone to fend for themselves). It is heart-breaking to see children wade past their lives alone. Children infected and affected by HIV/AIDS have an inherent ‘triple vulnerability’ – being a child, an orphan in case of their parents have died from the disease (most infections in a child are passed on from parents, unlike other routes of infection in adults) and that of a person living with HIV/AIDS.
On World AIDS Day 2017, let us get accurate information of the routes of infection so that we can put our anxieties (of being infected by people with HIV) to rest. Let us also extend our love, support and help – especially if we are healthcare providers or personnel, employers, or just family-care givers for children orphaned due to HIV/AIDS.
The virus does not ‘kill’, because treatment is available and free (government-sponsored). But the rejection does.
(Courtesy : Youth Ki Awaaz)