India needs to accept people living with HIV

Social stigma forces people living with HIV into the shadows
India needs to accept people living with HIV

Indian nursing students take out a public rally to raise awareness on World AIDS Day in Bangalore on Dec. 1, 2015. (Photo by AFP) 

World AIDS Day every Dec. 1 is celebrated as an occasion for people to unite and fight HIV but any achievement in fighting the virus is often nullified by the widespread discrimination and stigma people with the disease have to live with.

The Infant Jesus Children’s Home in Kothanur, near Bangalore, is home to 85 children and 35 women living with HIV. The youngest resident is 18 months old.

The children are orphans. Their guardians have had to leave them at the home because they cannot grow up like other children because of widespread discrimination, according to Sister Litty, a nun from the local Deena Seva Sabha congregation that manages the home.

"Indian society has not yet stopped looking down on people living with HIV," she said.

Doctor V.H.T. Swamy of Asha Kiran Hospital in Bangalore, who attends to people living with HIV, agreed. "Indian society has still not got over the stigma against people who are HIV-positive," he said.

"Most people no longer die from HIV and many of them live a very healthy normal life," he said.

In Goa, a Catholic stronghold, "people still harbor archaic attitudes when dealing with those living with HIV," said said Father Lino Florindo, who had to face his former parishioners’ ire after he permitted students living with the virus to attend classes at Fatima High School, Rivona.

In 2014, Father Florindo allowed 23 students with HIV to attend the school along but this triggered an outcry from many parents who eventually withdrew their students. "But the school management stood by the decision," the priest said.

What "extremely hurt" him was to see some Catholics instigating a mob forcing parents to withdraw their students from school, he said.


Medicine alone is not enough

A recent UNAIDS report said that the number of people accessing treatment in India has doubled. The government also provides free medicine to people affected by the disease.

What is needed now is social change so people living with the human immunodeficiency virus do not face discrimination. 

"Medicine is available but there is much more to our situation than that. We also need social recognition, additional nutrition, rest and care," said Veena, who works with people living with HIV in Bangalore and only wanted to give her first name.

Sister Mary Stella, who manages the Vishwas organization in Madhya Pradesh state said that people are "shattered" when they are first diagnosed.

The stigma is so strong that they are often asked to keep away from all public places, the nun said.

Sister Stella’s NGO has a list of 4,600 people living with HIV that they provide with help and counselling. "We provide them with constant counseling and all the help they need to face it boldly and live a normal life," she told

"We get free medicines from the government. But it is a tough job to help them live a normal life," she said, adding that her clients have to hide their condition and medical treatment from their friends and family.

Take 26-year-old Renu, whose husband died of an HIV-related illness a year after they were married in 2009. She said she contracted the disease from him.

Renu has not told her friends and relatives. Her parents and close family members know, but if their neighbors found out they would have to move.

She is now doing a Masters in Social Work to help others living with HIV. "I want to use the rest of my life to help others," she said.


Women suffer most

Women living with HIV suffer most, said Saumya, who wanted to be referred to by her nickname. She is the single mother of a 12-year-old boy.

Society looks down on people living with HIV, especially women so "I have not disclosed it to anyone," she said.

Although she contracted the disease from her husband, who died in 2005, "my in-laws blamed it on me and chased me out our family home. They called me a characterless woman," she said.

A woman with HIV is always seen as having loose morals, if not a sex worker, she said.

Luckily, her parents accepted her back home. "Now I am sharing my experience with others so that they can also regain their confidence and return to a normal life," she said.


Doctors turn away people living with HIV

In Kerala, acclaimed as one of India’s most educationally advanced state, the stigma associated with HIV is a concern, said Sunil Kumar, joint director of the state government’s AIDS society.

Most private hospitals in Kerala are reluctant to provide treatment to people living with HIV. The doctors refer them to government hospitals, he said.

"Even in some government hospitals, doctors are not prepared to treat people with HIV. They are afraid to conduct surgery on them," Kumar said.

Doctors in Malappuram district hospital refused to conduct a hernia surgery on someone with HIV so he had to be taken to an alternative clinic some 370 kilometers away, according to Joseph Mathew, president of the Council of People Living with HIV/AIDS in Kerala.

Children living with HIV face problems too. Parents object to their presence in school because they are afraid that they might pass the virus on even though HIV can't be spread by casual contact like hugging, kissing or sharing food, using common utensils, clothes or sharing toilets with persons living with the virus. There is no risk in coughing or sneezing and is not passed on through sweat, tears, saliva or urine.

A 19-year-old student at Wadi Huda Institute of Research and Advanced Studies in Kannur struggled after revealing her condition to fellow students. She was asked to leave the institute after she graduated her first year.

People like Mathew believe that that a long-term campaign is needed to change people's mentality. Without that, people living with HIV will be forced to continue to live in hiding.

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