Nepali Times
Living a little bit longer


With her parched lips, shrivelled face and skeletal body showing advanced stages of malnourishment, Shila Tamang stumbles around in her dark bedroom looking for a piece of roti.

Living alone with full-blown AIDS, 30-year-old Shila has not eaten for days. She is so weak that she has to use her hands to drag herself around. Abandoned by her parents and shunned by neighbours in this district south of Kathmandu, she is running a high fever and is suffering from tuberculosis and hepatitis C. The district hospital is miles away and the nearest government health clinic is a three-hour walk. "I want to die now," is all Shila can say. "Help me."

Health care used to be scarce at the best of times in these neglected districts of Nepal. But the country now has an estimated 60,000 people with HIV to take care of. Surviving on meagre incomes, most patients can't even afford food and basic medicines, let alone anti-retroviral (ARV) drugs that have made the disease manageable in the West.

Many Nepalis like Shila Tamang are dying before their time from secondary infections and malnutrition. That this should happen in Nepal, where millions of dollars in international aid is invested to control the epidemic, is ironic. Activists say poor Nepali patients see very little of the aid money because most of it is used for prevention, information and awareness, rather than for care and support, which some donors consider to be too expensive.

According to UNAIDS, about 10,000-15,000 Nepalis are expected to die of AIDS every year in the absence of effective treatment and care. "The donors consider this a low priority because they believe it is not economically viable," says activist Rajiv Kafle, who leads regular sit-ins in front of the UN building in Kathmandu, urging officials to prioritise care and support.

Activists like Kafle want the government to provide cheap or free ARV drugs to patients. But this treatment is fraught with problems. For some donors, such as USAID, it could mean having to provide expensive, branded ARVs, rather than the much cheaper generic versions because the US government adheres strictly to its patent laws.

Some donors in Kathmandu also argue that Nepal lacks the clinics, district hospitals and distribution units needed to provide effective ARV treatment. So far, ARVs are a priority only in countries with a high prevalence of HIV (one percent or more) in the general population.

USAID lists Nepal as one of 10 priority countries that have a low HIV/AIDS prevalence, there are nine other high prevalence priority countries. In low prevalence countries, it aims to deliver prevention programs, while in high prevalence countries it implements a package that includes care and support activities.

Donor priorities are written into Nepal's national AIDS strategy for 2002-2006, which declares: "In a resource-poor setting like Nepal, immediate universal access to anti-retroviral therapy and certain other AIDS-related medical interventions is not possible."

The National Centre for AIDS and STD Control (NCASC) is strapped for cash too. With less than Rs 5.6 million coming from the government's health budget, the centre is too donor-dependant to act independently.

In May, the government announced that it would provide ARV therapy to 100 more AIDS patients, adding to the 25 currently on the drugs. But the government depends on hand-outs from the Global Fund even for such a small number.

There are no accurate figures for just how much aid money Nepal gets for AIDS, but it is much higher than many other Asian countries. UK's Department for International Development (DFID), for instance, has given about ?2 million since 2002. And half the $30 million allocated to all health programs by USAID since 1993 has gone to AIDS work.

As with many other poor countries, funds do not go directly to the government. For instance, much of USAID's money is channeled through three large American NGOs that in turn support 40 smaller local groups. DFID funds are distributed through the UN system in Nepal.

Some government officials complain privately that most donors and their international partner NGOs lack transparency about how the funds are being used. "It is our own fault, we are not able to effectively scrutinise their proposals and monitor them," one senior health bureaucrat told us.

The NCASC itself suffers from political meddling-six of its directors were sacked in the last four years. "The role of donors becomes more powerful when the government is weak," says health activist Renu Rajbhandari.

Donors officials deny they are calling the shots. "If there is pressure, it's pressure to move forward to achieve its goals," says Anne M Peniston, deputy director of USAID's family and health planning office in Kathmandu.

UNAIDS' country coordinator for Nepal, Michael Hahn, says: "The problem is, how do we get things moving?"

Some activists are worried that donors don't give adequate importance to care and support, counselling and testing facilities, and this means the poorest are the hardest hit.

Providing care and support to infected people need not necessarily be difficult to implement or expensive, they add. Gains can be made in counselling and TB-control and care can be made home based, all of it with very little
money, especially when the work is done by small, community-based organisations.

No one seems to ask the AIDS patients what they want. Almost every infected person we met in Kathmandu and rural Nepal say all they need is money for care and support. They are are sharply critical of all the aid money that is wasted.

"So much money is spent on hoardings and advertisements for condoms-there is so little investment in saving lives," says Biswo Khadka, director of Maiti Nepal, one of a handful of NGOs providing ARV treatment, medical support and home-based care with funding from small charities around the world.

But some public health experts agree that care and support programs may not be practical to enforce now. "It would be costly, and the donor agencies will have to deliver their services through the local infrastructure, which is weak," says Bijay Rajkumar, an adviser to Save the Children (UK).

But this back-and-forth discussion is far removed from the desperate lives of patients like Shila Tamang. There are cases of infected women committing suicide and children dying from infections and lack of food. In these far-flung districts, patients are not demanding exotic ARV drugs, their need is basic: food and drugs to treat infections.

"Should we just stand by and let them suffer?" asks an angry Radhika Chaulagain, an activist in Makwanpur town who helps a group of infected women with free medicines, food and HIV-testing with the little money she gets from charities. "What happens to all the foreign aid we hear about all the time?"

(11 JAN 2013 - 17 JAN 2013)