MUMBAI, India — Subash and Vimal Barve live in a 200-square-foot shack deep in the slums of Ghatkopar East, a suburb of Mumbai. Outside their home, rats run over broken cement slabs and children pick through a fly-infested dump that ends at the couple’s doorstep. Inside, Vimal prepares a pot of chai as Subash, blind and HIV positive, stares straight ahead.
Life wasn’t always this hard.
A decade ago, the couple lived a middle-class life. They owned an apartment in Goregaon, a northern suburb of Mumbai, and a shoe shop in nearby Andheri. At one point, Subash employed eight assistants and earned 50,000 to 100,000 rupees ($1,100 to $2,200) a month. They rode around town on a motorbike, and when they went to the market, they never questioned how much food they bought.
“We have gone from a time when we had a lot of money to nothing,” said Vimal, sitting on the floor of her home.
Subash is one of about 320,000 disabled people living with HIV in India, according to a 2007 report by the UK Department for International Development (DFID). There is a higher prevalence of disabled people living with HIV than in the general population because of factors related to poverty, it states. Poverty increases vulnerability to HIV, and people with disabilities are over-represented among the poorest of the poor.
However, despite this correlation, those with disabilities who are living with HIV have not been targeted by assistance programs in India, according to Heather Ferreira, a program officer for the HIV/AIDS program at World Vision India.
Less than 2 percent of those with disabilities living with HIV receive support from HIV programs, the DFID report states.
The vast majority of HIV centers in India have no special programs or services for those with disabilities, according to a study completed in 2009 by the Ali Yavar Jung National Institute for the Hearing Handicapped, an autonomous body under India’s social justice ministry. The study found, for example, that centers have not considered confidentiality issues when serving a hearing impaired patient who requires a translator, said research officer Geeta Gore.
In 1997, a local clinic in Subash’s home village diagnosed him with HIV. The doctor did not tell Subash how he contracted the virus, how it spreads or what he should — or should not — do. He only said it was bad.
Subash began getting sick a couple years later, and Viral’s brother told her she should leave him. But she refused. If it was she who had gotten sick, she said, she knew Subash would never leave.
Subash went back and forth to doctors, many of whom he said treated him with disdain. Subash picked up a newspaper and dropped it to demonstrate how nurses often refused to touch him or hand him papers because of his status.
From 1999 to 2004, Subash attended a private hospital in Mumbai and spent all of the couple’s earnings, about 5,400,000 rupees ($120,000), on treatments for various ailments. To pay the bills, they sold their Goregaon apartment and Andheri shoe shop.
As the doctors treated Subash for vomiting, diarrhea and other related symptoms, no one put him on medication for HIV/AIDS or told him he could get free treatment at a government hospital, the couple said.
Along the way, Vimal had a blood test and found out she too was HIV positive. She gave birth in 2002, and with no information from any doctors or medical professionals, breastfed her son for 10 months. “It’s God’s grace that he’s not sick,” she said.
Vimal pulled out two photographs of Subash, taken a few years after they were married and before he got sick. In the photos, he has a thick black mustache and plump cheeks. Now, his thin facial hair rests on a sunken face.
In 2004, Subash heard about the free treatment at government hospitals and began antiretroviral drugs there. For the first time, he and Vimal learned how the virus spreads and what it is.
But even then, the care was far from comprehensive. Subash began losing his sight, but no one put him on medication to treat his eye infection. He eventually went blind.
“I wish someone had told me that’s what HIV does,” he said through a translator.
World Vision is now planning a three-year program that will target the disabled with services and education and aim to reduce social discrimination, Ferreira said.
The program will also bring more education and awareness to health care professionals. While there is now much less stigma against HIV in India than there was when Subash began seeing doctors a decade ago, bias and discrimination still exist, she said.
“We will work on telling practitioners that it is the right of patients to be treated,” she said.
In Subash’s case, she said, medical professionals should have been aware of the dangers of HIV causing an opportunistic infection in the eyes and treated it before the infection caused irreparable damage.
“The doctors do not address the minor problems and then it can turn into major problems like blindness,” she said. “If someone had really treated him, he would not have lost his total sight.”
There is also a need to provide HIV awareness and education to various disabled communities in India, say specialists. The disabled make up 10 percent of the global population, according to the World Health Organization.
Awareness about HIV/AIDS is “extremely poor” among institutions working for the disabled, Gore said. “They do not even think about it.”
Globally, there is a belief among families, disability organizations and groups working in the HIV sector that those with disabilities are less at risk for HIV, according to the World Bank/Yale Global Survey on HIV/AIDS and Disability, published in 2004.
“It is commonly assumed that individuals with disability are at low risk of HIV infection. They are incorrectly believed to be sexually inactive, unlikely to use drugs or alcohol and at less risk of violence or rape than their non-disabled peers,” states an article by the study’s author, Nora E. Groce.
However, those with disabilities are a vulnerable population who face the same if not heightened risk of exposure to the virus. Despite their vulnerability, the disabled have been left off the radar screen of the HIV sector globally and particularly in India.
“Access to information is being denied to people with disabilities,” said the director of the Ali Yavar Jung National Institute for the Hearing Handicapped, R. Rangasayee. “It is high time that these special category people are addressed.”
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