November 30, 2024
Ever since the first reported cases of HIV in the United States of America in the early 1980s and in Chennai in 1986, India, millions of people have lost their lives to the deadly disease of AIDS. As it was an emerging disease until the last decade of the 20th century, treatment protocols were still evolving and expensive. As no cure was available, the victims of HIV were often abandoned and ostracized by their families and society.
Amidst such a state of hopelessness, the Christian congregation named Camillians turned out to be a ray of hope for the abandoned and ostracized victims of HIV. They started the first HIV/AIDS Care and Support Center in Bangalore in 1995. It was a time when even the trained doctors were hesitant to treat the HIV-infected but the priests donning the white cassocks with red crosses embraced them with empathy.
“As no antiretroviral therapy was available at the time, most of the victims would die in 3-5 years but we could provide them some solace in the final stage of their life,” says Fr Siby Katharan, the director of Snehasadan, HIV care home at Gurupura Kaikamba, on the suburbs of Mangalore, which started in 2001.
Renni D’Souza, the chairman of the Child Welfare Committee says, “I have known the institute since its inception in 2001 when there was a lot of social stigma and lack of social acceptance of HIV victims. During those tough times, Camillians undertook the daunting task of rehabilitating HIV/AIDs patients by eradicating misconceptions. In line with the Juvenile Justice Act, it provides professional care to HIV victims with good infrastructure, qualified counselors, and other support staff. If I come across any HIV-positive child, I happily refer him to Snehasadan.”
Asked about the motivating force to care for the victims of dreadful disease, Fr Siby says they belong to the religious congregation called Camillians whose founder St Camillus is known as the patron saint of the sick and suffering. He used to motivate his followers to care for the sick like a mother cares for her sick children. Further, his congregation members take one additional vow of caring for the sick even at the risk of their own lives!
Initially, Snehasadan was an abode for the adult HIV-infected and their children. However, currently it is an exclusive home for 33 male HIV-infected children in the age group of 5-18 years who are pursuing school education in Bethany institution. Earlier, they had over 65 children some of whom have completed their school education and now pursuing professional studies such as MSW, LLB and one even PhD.
The female HIV-infected children and adults have another abode nearby called Jeevadan, a care center run by the Daughters of Camillus. This care center accommodates 25 female HIV-infected children and 15 women.
Fr Siby says that 90% of the inmates are orphans and the others have single parents. The good news is that the inmates of both the abode are completely healthy and symptom-free thanks to antiretroviral therapy, and emotional and social support provided.
Asked about the emotional status of the children, Fr Siby says that although they have accepted their condition and are generally stable, occasionally they are overwhelmed by the feeling that they are orphans. In such situations, Fr Siby reassures them saying he is their Father-figure. On a lighter note he adds, once a mischievous inmate came up with a funny suggestion that Fr Siby should get married so that they could have a mother figure as well!
When asked about the public’s perceptions of HIV-infected persons and the prevalence of social stigma, Fr Siby believes that although there has been a slight change in perception toward the victims, the social stigma is still prevalent. Reassuring people that HIV does not get transmitted through social contact, Fr Siby asserts that he has been living with HIV/ AIDS patients for the last 25 years and has been consuming food cooked by HIV-infected persons, yet he is virus-free.
Further Fr Siby says that although HIV is an incurable disease, it is certainly a manageable condition. If antiretroviral therapy is provided early on, progression of the viral load resulting in AIDS status can be prevented and the people can lead a healthy life just like the normal people for a very long time. The inmates of Snehasadan are so healthy that some of them won medals in sports and excelled in their studies. During COVID pandemic, although 23 of them were infected with Coronavirus, they could overcome it despite HIV infection.
After school hours, the inmates spend their time in diverse activities such as sports, yoga, studies, etc. To prevent classmates from showering sympathy and making them conscious of their condition, they are guided to introduce themselves at school as inmates of Camillus Hostel. Further, visitors are discouraged from asking about their details and their infection, in a bid to respect their privacy. However, students from colleges and other people often visit them on Sundays and spend time with the inmates, providing them snacks or meals and other essential things useful to them such as books, stationery, soap, toothbrushes, paste, grocery items, etc.
Ali(name changed) who is now 56 years narrates, “I was working in a restaurant in Mumbai. When I had symptoms of frequent fever, blisters all over my body, and cough (TB), I got myself tested and was diagnosed HIV positive in 2006. After I was admitted to Snehasadan, my life changed for good. After 15 years of my stay at Snehasadan, today I am completely symptom-free due to the excellent care I received. Had it not been for Snehasadan, I would not have been alive now.”
Kiran (name changed) from Raichuru, pursuing LLB says, “I stayed in Snehasadan for 11 years and completed my school education. Now I am staying out as it is an exclusive Children's Care center. Snehasadan has been my home and even our family could not care for us so much. It supports us in sports, education, and our talent.”
The Care House has 2 priests, one full-time counsellor, 2 nurses, and 2 visiting doctors. They spend about 13,50000 a year on the school fees of the inmates and a sizeable amount on staff salaries, medicine and food expenses. Fr. Siby says that the Mangalorean community has been generous so far in supporting the needs of the house.
Shivraj, a Counsellor at ‘Snehasadan’ says, “Some HIV-positive children hesitate to go home because they are extended a different treatment at home due to their health status. After I educated them, I am seeing a change in their attitude toward the children.”
‘Are the children conscious of their HIV status?’
Shivraj replies that a few children are apprehensive that their HIV status might affect their job prospects in the future and he reassures them saying they need not disclose their health status unless specifically asked to do so.
Appreciating the care, Shivraj says that the resident priests treat the inmates like their children. Whenever adult HIV victims approach him, he empathetically listens, counsels, and refers them to the antiretroviral therapy Center.
Finally, Fr Siby says that if any HIV-infected youth or adult feels hopeless, they should not hesitate to contact him on 9448118119 or 9686207119. Anyone eager to support the noble mission is welcome to contact Fr Siby or the administrator Fr Jomin Thomas on the same number.