In Sneha Care Home, Bangalore in the annual program 'Champion in Me' the biggest sports program for children living with HIV. Seen here with children and founder of Champion in Me Elvis Joseph
In Sneha Care Home, Bangalore in the annual program 'Champion in Me' the biggest sports program for children living with HIV. Seen here with children and founder of Champion in Me Elvis Joseph
  • Conducting a workshop in Snehagram
  • With hospital staff in the ART Center

Today is World AIDS Day and this year's theme is 'Right to Health'. Only 54% of adults 43% of children with HIV are receiving Anti Retroviral Therapy(global figures). The rest are out there not diagnosed, not on ART and that is the challenge. Additionally, insurance companies refuse to cover HIV persons under health insurance even for their non- HIV related ailments. If we are hospitalized for an accident, we have medical insurance to cover our expenses but an HIV patient gets no financial support from any scheme. To add to the insensitivity in our health care and allied industries, doctors, nurses, paramedics and health facilities are known to refuse treatment if they come to know patient has HIV. This is the composition of stigma and the dimension of discrimination where the opinion( or fear) of one segment affects the survival of another. Can we check our fears and knowledge at personal and professional levels so people are not denied the right to health?

A 13 year old girl whose both the parents 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 fear about what will happen to her now, who will care and protect her, who will pay for school and clothes- things that no child needs to worry about when they have parents. One day she fell sick and was taken to hospital by her father's sister where doctors did some tests and revealed that the little girl was HIV infected. Whatever little support the child had enjoyed after she lost her parents in terms of her aunt and living with her dwindled over night.

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 often would overhear fights between her father's sister and husband. He would charge 'Why does she have to live with us? She might infect our children. I heard 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 dumped her in an orphanage for children with HIV and discouraged her visits during holidays. In another year they stopped visiting her in the orphanage. In the 100 odd children in the orphanage she was one of the few who had no one visiting her during the academic year. The trauma of rejection by family initiates destructive behavior in children especially in their adult life when they interact with people.

The biggest problem next to treatment of persons living with HIV/AIDS is the fear people have of getting infected from them and shunning them at every level, in personal and family relationships, in employment and opportunity.

Fortunately, the organization that looks after her is exemplary. I am so happy there are few of them. Few organizations which are doing great work with children who have HIV/AIDS are Karnataka Health Promotion Trust(Karnataka, Tamil Nadu, Maharashtra, Andhra Pradesh), Snehagram(Tamil Nadu), Sneha Care Home( Karnataka), Bangalore School Sports Foundation( Bangalore), Carmel Jyoti(Manipur), Snehalaya (Maharashtra) and St. Catherine’s in Mumbai.

If you are an adult, and have a child(or children) in your life, please don't leave them( distance yourself or desert them, commit suicide and leave them alone to fend for themselves). It is heart breaking to see children wade past life alone. Children infected and affected by HIV/AIDS have triple vulnerability inherent with being a child, an orphan in case of death of parents from the disease( most infections in the child are parent to child unlike other routes of infection in adults) and a person living with HIV/AIDS.

On World AIDS Day 1st December 2017 let us get accurate information of routes of infection so that we can rest our anxiety of getting infections from persons with HIV and extend our love, support and help if we are health care providers and personnel, heads of organizations giving employment, or just family care givers to children orphaned by HIV/AIDS.

The virus does not kill because treatment is available and for free( government sponsored) but the rejection does.

7Encouragement

Thanks for speaking for them, I want to support the girl in my own little way. I want her to have a sister in Nigeria too.

Olutosin Oladosu Adebowale Founder/Project Coordinator Star of Hope Transformation Centre, 713 Road, A Close, Festac Town Lagos-Nigeria https:

Dear sister Olutosin,

The strength of the program run by the orphanage/NGO is that they educated these children on routes of infection of HIV/AIDS and built their communication and negotiation skills so they can talk to their family, caregivers, relatives, employees that they should not be feared and others will not get infected by them.

This sensitization has changed the lives of children living with HIV and adults too. It gives another dimension to their empowerment. I will be happy to connect you to the NGO mentioned.

Thank you for reading and for the love my sister.

Love and hugs,

Urmila Chanam,

India

“The people who are crazy enough to think they can change the world are the ones who do.”

Hi Urmila, We should continue to educate family who are living with HIV/AIDS, to lessen stigma in our society.  Thank you for this awareness.

Connect with a heart.  Live a life of empowerment. Influence to accomplished.

 

 

Thank you for your comment and recommendation. The families certainly need more awareness but the caregivers in medical and health care, educationists, employers, public servants and administrators, media, passers by- everyone matters because a person interacts with all of them to live this life.

Thank you for reading. Hope you will keep in touch.

Love and prayers,

Urmila Chanam

“The people who are crazy enough to think they can change the world are the ones who do.”

Dear Urmila,

This is a heartbreaking story, mitigated only by knowing that this girl has adults with her now who care, and to know that at least some have access to free medication. You are so right that stigma and discrimination make getting help so much more difficult. People in the most need are all too often the ones to be refused. Thank you for the reminder that we can all make a difference by being educated ourselves and by speaking out in our communities.

In awe of your far-reaching work,

Tam

Dear Tam,

You are doing such effective work on getting women around Canada and adjoining regions to reflect, speak out and join hands together to make a difference in the quality of life of people. If we did this with people who need support most, people living with diseases, we would address an area very few people even think about. No one thinks about the people with diseases or the sick till they fall sick or have a sick one in their lives.

Love always,

Urmila Chanam,

India

“The people who are crazy enough to think they can change the world are the ones who do.”