By Ashwin Kumar*
As per the latest government reports (2019), India is estimated to have around 23 lakh people living with HIV-AIDS. Though the epidemic has an overall decreasing trend in the country, the lives of infected individuals in our society have seen the least improvement. Here is the story of one such individual battling against all the odds to create a more inclusive society.
Nagaratna Ramagouda is the founder of Ashraya Foundation, an organization supporting HIV infected girls and women. She and Archana Padmannavar and Pramila Kadrolli started the organization in 2016 with a vision to take care of and empower adolescent girls, underprivileged women, and widows infected and affected by HIV.
Nagaratna’s battle with HIV started at the young age of 16. Born in the Belagavi district of Northern Karnataka, she became a victim of child marriage due to her family’s financial struggles. The young girl hardly knew what was awaiting her. Nagaratna and her husband were diagnosed with HIV within the first six months of their marriage. It was later learnt that her husband was transfused with infected blood while undergoing surgery before their wedding. Doctors gave the couple a timeline of 3 months to live. It has been 24 years since, and Nagaratna stands tall and strong, but her husband became a victim of alcohol addiction and not HIV.
She recalls how her doctor informed the couple about the HIV diagnosis, “you have three months to live, prepare yourself”, these words took away their hope for living. She requests all the doctors out there to give the patients hope to live even when there is none. A person on a deathbed would undoubtedly love to believe in the possibilities of living.
The couple kept the news to themselves, fearing being ostracized and discriminated against by their family and society. “We spent 3-4 years waiting for death”- remembers Nagaratna. The desire for motherhood acted as a ray of hope in her life. The words of another doctor named Shivaram reassured her of a future, a future where she could have a healthy child, a reason to live for. She had to struggle physically, mentally, and financially for the next 27 months (9 months after conceiving and the next 18 months of intense care) to hear the news of giving birth to a healthy boy. This set her on a new path, a path to make a difference in society, to make the world a better place for people living with HIV.
The real struggle started when the couple decided to publicly share their HIV status in 2004 to lead the change and shatter myths surrounding HIV/AIDS in society. The couple faced social discrimination and were passed inappropriate remarks all the time. Nagaratna was kept away by her relatives for ten years, and her son was forced to leave his school. She was determined to fight this and challenge every adversity life would throw at her. The courage has kept her and her fight alive, and she continues to inspire, almost 24 years after she was told she had only three months to live. Now, the very society that disowned her is now proud of her.
Today, Nagaratna is a dedicated social activist leading the fight against stigma around HIV-AIDS and spreading awareness on the disease. Through Ashraya Foundation, Nagaratna and her team have established the first-ever care centre in Karnataka for adult girls, widows and underprivileged women suffering directly and indirectly because of HIV-AIDS. The foundation’s primary focus is the age group of 18-25 years, the group that Nagararatna considers is the most neglected by society and the government. “Younger kids who have HIV are sympathized and are taken care of by multiple institutions, but the adults (18-25 years) have nowhere to go”, – says Nagaratna.
The Ashraya Foundation care home was established to provide an enabling and protective environment to HIV infected adolescent children. Most of these youths are orphaned at a very young age leaving them with no support for their education, health, livelihood, and more importantly, care and protection. The centre also shelters and guides underprivileged women and widows affected by the disease.
Nagaratna’s face gleams with pride, talking about the 20 girls (who she addresses as her kids) sheltered by the care center. The girls are provided with education, treatment, and skill development training. Though not many of them are interested in studies, all are trained to earn a livelihood thanks to organizations like Rotary Club; from seeking job opportunities to providing them, these girls have come a long way. The girls employed other underprivileged girls in their locality to produce more than 35000 masks during the COVID pandemic.
The foundation is currently working on eight major projects with the following mission
- Awareness of health and HIV-AIDS
- Awareness of the rights of HIV infected people
- Advocacy programs for mainstream inclusion of HIV infected individuals
- Awareness and promotion of marriages among infected individuals
- Preventing accidental marriages between infected and healthy individuals to curb disease spread
- Empower and educate the affected
- Awareness on Protection of Children from Sexual Offences (POCSO) Act, 2012
The Ashraya Foundation has directly reached out to more than sixty thousand people through their awareness programs and other events across Karnataka and a few parts of Maharashtra and reached lakhs together through media. The foundation is going beyond its strength to help the society that condemns HIV – from providing education support to more than 500 kids to sheltering families affected by floods in the region, Ashraya Foundation is proving that there is nothing more significant than empathy and compassion. Nagratna says – “everyone in the society will die someday or the other, but when we embrace the people going through difficulties, we give them hope to live for a few more days” – this is the philosophy that drives her in this movement.
Ashraya Foundation has relied on the kindness of individual donors, private foundations, and corporate to fund programs and initiatives. With their support, the foundation furthers its awareness, education, and empowerment programs and, most importantly, connects people searching for a trusted, protective, and supportive environment.
Nagaratna is an inspiration proving to the world that you can live a healthy and a successful life with HIV.
*Student, IIM Bangalore