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Business News/ Politics / Policy/  Being positive is not a curse

Being positive is not a curse

From educating the HIV positive to helping them out financially, how a small NGOthe Delhi Network of Positive Peopleis making a big difference

More than two million Indians are thought to be living with HIV, just behind the numbers in South Africa and Nigeria. Photo: Priyanka Parashar/MintPremium
More than two million Indians are thought to be living with HIV, just behind the numbers in South Africa and Nigeria. Photo: Priyanka Parashar/Mint

Sometime in her late 20s, Maitreyi L. found herself on a deserted stretch of road in West Bengal’s Howrah district with her two sons, aged 8 and 2. Her in-laws’ house was a few kilometres away as was her parents’—but Maitryei had nowhere to go. The previous night her brother-in-law had tried to set her house on fire. And she was not welcome in the village any longer. 

“I had lost count of the number of times in my life I have had to start from scratch but that day I wasn’t sure how much longer I could go on," she says, nearly a decade later.

Maitryei is HIV positive (HIV+) and the day she is describing took place within a week of her husband’s death who had AIDS. Her life changed when a distant family member finally mustered the courage to confide in Maitryei of her own HIV+ status and took her to an AIDS centre. HIV is short for human immunodeficiency virus, a retrovirus which causes AIDS.

Until then, Maitryei’s life had been in a downward spiral since her first marriage. She moved to Delhi a few years ago after getting married to a man she met at an awareness rally about AIDS. He’s not HIV+. 

More than two million Indians are thought to be living with HIV, just behind the numbers in South Africa and Nigeria. And while the fight against this disease has progressed for the better part of three decades, for most people it’s no more than large numbers and figures. Each of those numbers tells a story of dreams—some broken and some rebuilt.

It is the story of people like a 32-year-old housewife Nisha Mahto, a widow and a young mother Mamta, a 28-year-old gay man Ballinder, and of Maitreyi. All of them are HIV+ and are now associated with the Delhi Network of Positive People (DNP+), a non-governmental organization (NGO).

“The all-pervasive emotion when you are diagnosed positive is fear—the fear of death. Stigma, economic hardship, all of that is secondary," says Mahto from Delhi’s Fatehpur area. She was tested positive in 2013 when an ear infection wouldn’t heal. It was Maitreyi, an outreach worker with DNP+, who approached a weeping Mahto in the antiretroviral therapy (ART) centre of the All India Institute of Medical Sciences (AIIMS) a few days after her diagnosis and helped her find her feet—and hope.

From educating the affected to helping them out, be it in filling out forms, getting drugs and even financially, DNP+ has been assisting people like Maitreyi, Mahto, Mamta and Ballinder since 1999.

“We are there at the ART centres of hospitals like AIIMS and Safdarjung, where we help people with paperwork and general whatnot. Sometimes we approach them, sometimes the hospital staff directs them to us but between us, we make sure everyone has an offer of help from us," says Mamta, who works at the ART clinic in Safdarjung Hospital.

The first step towards helping out is telling the patient that they too are HIV+. “I know from personal experience the sense of relief that floods you when you hear another person say ‘I, too am HIV+’," says Mamta. 

DNP+ was started by three men from Manipur who were diagnosed as HIV+. “There was a lot of stigma attached to AIDS and few places which offered space and help to the infected patients. At that time there was no ART treatment also. That happened only in 2004," says Paul Lhungdim, who is a coordinator at DNP+. It was an era rife with misinformation and fear about AIDS, remnants of which continue to mark out the disease.

Ballinder was only 18 when he gave his blood for an HIV test, that too on a whim. “I used to work with an NGO that dealt with MSM (men who have sex with men) and other issues. They were getting tests done and that’s how I discovered I was HIV+," he recalls. By 2014 his skin started developing lesions which soon spread to other parts of the body. It was then that he called up a DNP+ volunteer who directed him to the Shalom Care Centre, a non-profit that works with patients suffering from life limiting illnesses. No one in his nine-member family knows he is HIV+ and suffers from Kaposi’s sarcoma, a form of skin cancer. He has told them it’s a skin infection which he is getting treated at AIIMS. Ballinder rents a room from a friend where he keeps his medical reports and where he recovers from chemo sessions. DNP+ has been helping him financially. Each chemo session costs Rs10,000 and there is the expense of the room he rents. “I can’t work because 15 days in a month I have to devote to my treatment. DNP+ helps out with money, tests, etc. Apart from that I have a friend who gives me money," he says. Ballinder is a regular at the ART clinic of National AIDS Control Organisation (NACO), under the ministry of health and family welfare.

The annual budget of DNP+ for its Neb Sarai project, where this programme is conducted, is Rs12 lakh. This includes all their outreach programmes, staff salaries, maintenance, etc. “The salary for the staff is meagre, the work exhaustive but we have to serve the community," says Lhungdim. DNP+’s largest benefactor is Global Fund, an international NGO that works for the eradication of AIDS, tuberculosis and malaria. The money comes to DNP+ as a sub-sub recipient via NACO.

DNP+ had other international donors before, but in recent years there has been a funding crisis. It was told that salaries for outreach workers could not be included in the grant—at which point it refused the aid. “If we don’t pay our outreach workers, then how do we serve the community?" Lhungdim says, and adds that while the organization has funds for the project, it has to really stretch itself to provide for all the services. “For how long can we manage?" he says. At DNP+, individual donations are used to help specific cases, like Ballinder who struggles with the twin secrets of his sexuality and illness.

“Sometimes people want to come and talk to our staff and the people who work for us. In such cases we ask them if they will be willing to donate to help these people as financially it’s an uphill struggle for most," says Lhungdim.

 “Our work with patients doesn’t end with just counselling at ART centres. We often take patients or their family members to care homes/hospitals, help out in emergency situations, etc. All of this also requires financial help," says Mamta. Even a small sum can help someone live the last few days of their life in dignity and freedom.

The conference room in DNP+ office is echoing with the laughter of people who have gathered there today. It is the one place Maitreyi says that has accepted them wholeheartedly. “It’s a home away from home. Why will we not always be bubbling with laughter here?" she asks.

What a donation can do:

The Delhi Network of Positive People (DNP+) is providing emergency services such as home visits, hospital admittance and transportation to care homes, etc. for HIV+ patients on a daily basis. Be it ambulance or medical bills or even nutrition needs, individual donations will go a long way in easing DNP+’s fund crunch. 

Contact: Paul Lhungdim at 011-29535239

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Published: 03 Oct 2016, 11:01 PM IST
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