Nepali Times
We still want to live


Mansara Sijapati smiles as she poses for a photograph, but then breaks down and cries when she tells her story.

Four years ago, her husband killed himself after strangling their three-year-old when he found out they both had HIV. Mansara was kicked out by her husband's family and even her own mother refused to take her in.

"But I still want to live," says the 31-year old Mansara even though she is landless and homeless. Her brother-in-law has given her refuge, but she can't even afford food or pay for visits to Surkhet for her CD4 count to measure her immune strength.

MIDDLE OF NOWHERE: The village of Rakam in Dailekh which has been ravaged by AIDS.

According to the District Health Office (DHO) there are 185 people, mostly widows and children, living with HIV in Dailekh. A majority of them are here in the village of Rakam, but they get no help from the government. Their only hope is a local group called Parivartan Ko Lagi Pahuch (Access for Change) which distributes antiretroviral drugs once every two months.

There are only two voluntary counseling and testing centres in Dullu Bajar and Chukla, both several days walk far away from remote VDCs with high HIV rates like Rakam. But even these two centres have neither the budget nor the support to take care of the epidemic in Dailekh.

"After detection we worry about breaking the news to them, and we try our best to console them," says Sushil Bikram Thapa from the Nepal STD and AIDS Research Centre (NSARC). There are many cases of suicides after being detected with the virus, and there is a dire need for new centres in the district.


"We are desperate for help, please help us communicate this message urgently to the central government and the UN," says Gehraj Khanal, chief of Rakam Karnali Sub-Health Post, who is the only health official in the VDC. "It is not the disease that is killing patients, but the mental stress and poor nutrition."

Mid-western Nepal is an AIDS hotspot mainly because infected male migrant workers spread the virus on returning from India infecting, wives and new-born babies. The high-risk group in Nepal's concentrated HIV epidemic is now no longer injecting drug users but the male labour migrants.

"I don't understand why international aid agencies and the National Centre for HIVAIDS and STD Control have abandoned these people, at least they could help the children," says Deepa Bohara, an activist with Parivartan Ko Lagi Pahuch.

Mansara Sijapati tells the story of a husband who committed suicide after strangling his HIV-positive daughter. The scenic beauty of a Karnali sunset masks the suffering of this neglected land.

So far, the NCASC provides only Rs 200,000 per year to support all people living with HIV and AIDS in Dailekh, but care and treatment for each person costs at least Rs 25,000 annually. There is also a crucial need to support HIV positive children and orphans who need help with nutrition and education.

We are very disappointed and frustrated with the people running the Global Fund who have totally abandoned this district," says Dailekh's Local Development Officer, Dil Bahadur Shahi.

Khagendra Jung Shah of Dailekh Hospital says the lack of state support is dangerous because people feel there is no point in getting tested. The NCASC's Hemant Chandra Ojha agrees that Dailekh needs serious and urgent attention, and has been hampered by the lack of strong advocacy from the district's aid coordination committee. The government spent $20 million in 2010 for its HIV response, but it doesn't look like much of it got to Rakam.

In Kathmandu, UNAIDS country chief Maria Elena Filio-Borromeo is also surprised about why Dailekh falls between the cracks. "It's amazing that there is big money but it is not going to a place like Rakam, we need to look at why this is happening," she told Nepali Times.

Beyond news

Suraj is just 12 years old. Ravi is eight and Siva is 13. They are all HIV positive orphans living in Rakam who lost their parents to full blown AIDS. Ravi asked visitors: "Are you here to help us?"

Such questions are always inevitable, and journalists are often at a loss on how to respond to them. We parachute into villages, interview a few people and head back to the city with 'exclusive' interviews and 'quotes'. We gather news, write reports and inform the public, and move on to the next story. But is that enough? Isn't there a higher calling?

Shouldn't journalists make sure that the responsible people, in this case, aid agencies and government, are held accountable and pressured to take action? In other words, is awareness enough? Shouldn't there also be action?
If reporters do that, they are said to have crossed the line into activism, or called 'NGO journalist'. But in places like the rugged, impoverished mountains of mid-western Nepal, journalists have a job not just to collect and disseminate information, but also to follow-up with the authorities in Kathmandu. Bearing witness to suffering is not enough when there is so much indifference around.

In Dailekh, officials at the DDC and the DHO blame apathy in Kathmandu to the AIDS epidemic here. We took that to the officials in Kathmandu. The UN and NCASC admitted frankly that they lacked information about the situation in Dailekh and promised to investigate. Let's hope that happens soon.

Here in Kathmandu, the faces of HIV widows and orphans appear to urge action, forcing me to ask myself: "What have I done to alleviate their plight?" One thing is sure, writing about it is not enough anymore.

Naresh Newar

Read also:
That time of the month, RUBEENA D SHRESTHA in ACHHAM
Old traditions that banish women to outhouses during their periods die hard in mid-western Nepal despite literacy and affluence

See also:
An epidemic of stigma and discrimination, BHRIKUTI RAI
Fewer Nepalis are being infected with HIV/AIDS, but ostracisation within families, in schools and workplaces is still a major barrier

"They don't get rich, they get HIV", NARESH NEWAR in ACCHAM
In Achham, migration and HIV are destroying the lives of women and children

1. S.T
' Hemant Chandra Ojha agrees that Dailekh needs serious and urgent attention, and has been hampered by the lack of strong advocacy from the district's aid coordination committee.'.........................
                Lack of advocacy? --Now, Do we have to hold the  feet of  those sitting in NCASC  in name of advocacy?

2. Marlyn F. Borromeo
Dear Nepali Times Editor,

Thank you for allocating 2-full pages on HIV and AIDS issues in the Nepali Times 13-19 April 2012 edition.  It speaks volume about your newspaper's strong commitment to bring out development and social issues to your readers - and hopefully generate the needed action on time.

Indeed, I have read, with great interest, the article "We still want to live". It clearly puts a Nepali woman's face to the HIV epidemic in far flung village like Rakam in Dailekh, where apparently the needed HIV/AIDS services are very limited. It articulates facts like the resources for HIV and AIDS response in 2010 and also calls for the active and more meaningful engagement of journalists in educating the society about HIV/AIDS and its related issues- and moving from words to action as the writer mentioned: going "beyond news"- to make a real difference in the lives of Nepali women living with HIV, like Mansara Sijupati.

More power!

Dr. Marlyn F. Borromeo
UNAIDS Country Coordinator for Nepal and Bhutan

(11 JAN 2013 - 17 JAN 2013)