For the past 15 years as the AIDS epidemic has spread in Nepal, donors, government and health activists have focused on prevention through public awareness about modes of infection.
But statistics like a recent survey that shows 90 percent of Nepalis are aware that condoms help prevent infection, but only 12 percent actually use them points to a big gap in changing public conduct.
As the unofficial estimate of the number of infected people in Nepal approaches the 80,000 mark, the issue of rehabilitation, care and cure have also become important. Although AIDS is still officially a disease without cure, there are now anti-retroviral drugs (ARV) that allow patients with HIV to live longer by bolstering their immune systems. In combination with conventional drugs to treat opportunistic infections, ARVs can indefinitely prolong the life of an HIV patient as long as the treatment is not temporary.
Last month, the government announced amidst great media fanfare that it was beginning to treat HIV patients with ARVs. The campaign was launched at the Sukraraj Tropical Infectious Disease Hospital in Teku with free ARV treatment for five patients who were paraded on stage. Activists who have been campaigning for access of treatment were angry that the patients were shown on television receiving their medications from Health Minister Kamal Thapa.
"It showed extreme insensitivity on the part of the government towards the plight of the patients," said one activist. "If this is how callous the government can be, we doubt if it is really committed to lifelong treatment or whether it is prepared for the legal and ethical implications of an unsustainable ARV program."
The government's anti-AIDS strategy, unveiled two years ago, says ARV therapy is actually not feasible or affordable for Nepal. But there seems to have been a U-turn, and the government now says it is launching a pilot project to treat up to 25 patients with ARVs. The reason for the hurry seems to be to demonstrate that Nepal has the capacity to absorb the $11 million earmarked to fund ARVs in Nepal over the next five years from the $15 billion Global Fund announced by US President George W Bush last year.
ARV treatment is very expensive, costing up to Rs 2,600 a month for the rest of the patient's life. Most Nepalis with HIV will never be able to afford it, and it is also beyond the government's budget capacity to provide the drugs to all HIV patients for life.
AIDS activist Rajiv Kafle, whi is himself HIV positive, is critical of the government undertaking ARV treatment without first ensuring that treatment will be sustainable. "It is good news for us positive people that the government has started ARV therapy, but it will be a blunder if it is done without homework and the necessary commitment to provide the drugs to patients for their entire lives."
Shyam Sunuwar, 32, is a farmer from Sarlahi. He had been suffering from diarrhoea and fever for the past six months and came to Kathmandu for treatment. He was diagnosed HIV positive at Teku Hospital. Although he knew about HIV from radio, television and leaflets, he never felt it necessary to use protection while having physical relations with a woman he trusted. He fears his pregnant wife back home in Sarlahi may also be infected.
Now that the enormity of his situation has dawned on him, Shyam has been told by his doctor that he may only live six more years. He is torn by guilt and a sense of responsibility towards his wife, two daughters and a sister. ARV treatment would prolong Shyam's life, but he can't afford it and the government's therapy plans are restricted.
For the moment, as per WHO protocols, the government is only considering HIV patients with CD4 cell counts of less than 200 for ARV therapy. But cost of the treatment is only one of the issues. The government also has to ensure proper training of health staff for selecting patients, and there needs to be a well-organised infrastructure to take the drugs to the patients-many of whom may not even be visiting hospitals. The right people need to get the drugs in the right manner with a strong supporting network of health and social counseling. Follow-up clinics need to be set up with professionals.
"There must first be a concerted national policy to address the epidemic and a well-organised mechanism to deliver therapy," says Michael Hahn, country coordinator for UNAIDS in Nepal. The government has been promised help from the UN to support ARV therapy, mainly because as the epidemic grows there will be more and more HIV patients and the sooner the government can start more patients on ARV the better.
But for now, the government only has the resources to extend ARV therapy to 25 patients. "This is not just a medical issue, it has impact on every sector of the economy and society, and the whole population is vulnerable, not just high risk groups like sex workers, their clients, injecting drug users or migrant workers," says Ram Prasad Shrestha at the National Centre for AIDS and STD Control.
The government wants to ensure that there are rehabilitation centers before it commits to medication. It also wants NGOs involved in the process. "Unless there is a joint effort of the community, donors and the government, we cannot make it a self-sustaining therapy," Shrestha adds.
At the Teku Hospital, nurses Nir Kamal Basnet and Bhagbati Shrestha are counselling patients who have come for ARV therapy. "We get at least ten patients every day from all over Nepal who have heard about ARV, we have to send them for the CD4 test, and then the committee will select them on the basis of their physical and economic condition," Basnet explains.
For now, it looks like the decision between life and death, and how much longer HIV infected people will live, which Nepali will get ARV therapy and who won't, will be decided by a committee.