It wasn't until she heard the village gossip about HIV having been the cause of her husband's death, that Leela decided to get tested for the dreaded virus. Her worst fears having been realised, Leela had no choice but to focus all her energies on staying healthy for as long as possible so that she could care for her daughter. When Pratima Patil of SAATHII (Solidarity & Action Against The HIV Infection in India) visited them, Leela's nine-year old daughter, who aspires to be a singer, sang a breathtakingly beautiful song about prayer - she spends long hours praying for her mother's health. "There are many women like Leela - they end up finding out only after the husband is dead that they were at risk of contracting the virus, and it's often too late to protect themselves. These women are then shunned by their families and left to fend for themselves", says Patil.
I spoke to Patil, the associate director of SAATHII in the US, after she returned from a fact-finding research trip to rural India. She visited patients and orphanages for HIV-infected children in rural Maharashtra, bringing back heart-wrenching stories of the stigma that infected people (and even people who are not infected but have lost a family-member) have to face. SAATHII is an organization based in the US and in three cities in India, working to raise awareness about issues related to HIV/AIDS, with the aim of expanding access to prevention and treatment services.
Parts of rural India are in the throes of an HIV epidemic. Up to 5% of all people in some areas carry the virus. Women who test positive in antenatal clinics most often claim to have never had casual sex. However, like Leela, they are dependent on their husbands to also be faithful in their relationships in order to steer clear of HIV. Men in rural India, however, often migrate to cities after a harvest, looking to earn some extra money. The three M's - Migrant Men with Money - it turns out, have played a large role in the spread of the virus from high-risk populations into the general rural population.
"The country is in the process of setting up testing facilities at the taluk level, but this will still not bring testing to the doors of the rural population", says Dr. Sai Subhasree Raghavan, founder and director of SAATHII. "One way to really bring testing to the villages is to integrate it with the rural health mission, which does reach villages via their village level workers", she says. The National Rural Health mission could bring voluntary testing and basic health care to villages. But this will happen only if innumerable vertical programs can be integrated and if primary health centres (PHCs) are allowed access to funds for the specific tests and drugs needed in the villages they serve. By contrast, in the present scenario, people that Patil met had to travel 4 hours on a bus to the district headquarters to get tested; this cost them their day's wages and forced them to forgo earnings, and by extension, food for the day - an obvious deterrent in itself to voluntary counseling and testing.
HIV is mostly sexually transmitted in India, with the exception of the north-eastern states, where injecting drug users are the majority of HIV-infected people, the virus being transmitted via used needles. Large areas of southern India, notably Tamilnadu, Andhra Pradesh and Karnataka, as well as parts of rural Maharashtra, have been labeled "high prevalence" areas. Prevalence is measured in terms of percentage of people who test positive for the virus. Overall in the country, prevalence is put at about 0.8% in the general population and less than 5% in the groups most at risk, which makes ours a low-prevalence country. In parts of India though, general prevalence is as high as 5%, making those parts, very high prevalence. Of course, when we're talking about a country with a population of 1.1 billion people, a small increase in percent infected people translates to a very large increase in the sheer number of people carrying the virus.
The virus has taken the largest toll on the most productive people in society. Grandparents - grandmothers, most often - take on the burden of caring for their grandchildren. Patil tells the story of Paribai, a grandmother of two, who, at a frail 60 years of age, works 10 hours a day in the fields to earn Rs.30. That's just enough to bring home enough flour, lentils, sugar and salt to feed the four of them that day. Some days, the grandparents go without food to allow the grandchildren to eat. "And this is by no means an uncommon story", says Patil. She visited an HIV-infected boy suffering from Tuberculosis (TB) in hospital; he weighed 17.5kgs at 12 years of age. His grandmother, his sole caretaker, was at his bed-side; she cleans houses everyday to make money for medical expenses, resorting to borrowing money for school fees.
TB is one of the major killers in India. It is treatable with a regimen of drugs. Patil visited a little boy who is HIV positive, and has TB, in addition to other treatable conditions such as skin rashes. "He is most-probably a candidate for Anti-Retro Viral Drugs (ARVs)", says Patil. His grandparents (also his caretakers), can't afford the trip to the hospital in the district headquarters in order to access either ARVs or drugs to fight his TB and skin infection.
While anti-retro viral therapy is being made available to the public free of cost, on a limited scale, there is no government fund that grandparents of children orphaned by HIV, or even the children themselves, can tap into to. The government is in the process of consultations to provide some aid to such people, says Patil. We will have to wait and see what comes out of these consultations. We can hope, in the meanwhile, that the government takes a well-rounded approach to dealing with the problem: an approach that addresses the need for testing centres accessible to villages and for reliable availability in PHCs of not just ARVs but also even more basic drugs to treat opportunistic infections. Most importantly, the government needs to step up education of people at the grassroots so that women at risk know about the disease, how it is spread, how to protect themselves, where to get tested, and where to access ARVs.
There has been some argument about whether India is, in fact, faced with an HIV crisis at all. Arguments over the numbers of infected people, though, are beside the point. With government hospitals in district headquarters being the only publicly funded testing centres in populous states like UP, it is quite likely that we are underestimating the number of infected people. That aside, though, the fact that we can get Anti-retro viral treatment (ART) to only 50,000 of the 500,000 (and only 1,500 children out of 15,000) who need them, even as we boast of exporting these drugs to African countries, speaks quite poorly of our own basic health system. In the past few years, policies to tackle the HIV/AIDS epidemic have all targeted urban centres, leading to the availability of Voluntary Testing and Counseling Centres and ART in a large number of government hospitals in big cities. It is only now that the government is turning to rural areas as the disease spreads into our villages. The government aims to have set up close to 100 treatment centres by the end of this year.
"We need to come up with dramatic, innovative approaches to get ART at affordable prices to our own citizens", says Raghavan. She visited Malawi last year where drugs are given by community-based organizations in the communities. "Such a decentralised approach is the only way we will be able to expand services", she continues. India's health budget is a dismal 0.9% of the total budget. As a result, the current level of funding to provide ART to 135,000 patients over the next five years is coming from the Global Fund. "We need to identify sources of funding within the country to cover funding for the rest of the 350,000 patients who need ART.
Unfortunately, there has been no large-scale initiative from the pharmaceutical industry to come together to scale-up these services to the patients. And accountability lies with all of us - with the government, with civil society, with the pharmaceutical industry, with the activist and with the private sector. We have not been able to come together to make this happen - and it should be very possible to make it happen", says an impassioned Raghavan. Government policy is still reacting to the spread of the virus into rural India. This would be a good time to reverse that trend and pro-actively take a bottom-up approach allowing primary health centres and sub-centres a degree of autonomy, so that they can spend an allocated budget on drugs and treatments most required in the particular villages they serve. This would also allow the private sector and pharmaceutical industries to step in and fill the most glaring gaps in supply of not just ARVs, but also drugs to treat TB and rashes.
There are signs that the government is on the right track: On August 8th this year, representatives from 620 districts were invited to Delhi to discuss a grassroots approach to tackling the issues surrounding HIV/AIDS. Such approaches need to be backed up by renewed spending by both the state and union governments to revamp our public health system. Dealing with the HIV epidemic could lead to a fortuitous tackling of chronic problems in India's public health set-up. HIV-infected people may then be able to access not just ARVs but also basic drugs to treat TB and skin rashes without the delay and uncertainty present in PHCs today. Even patients without HIV who need access to health care would be well-served by an improvement in access to a reliable supply of drugs at well-run and well-maintained PHCs. The HIV epidemic has brought into focus multiple public health issues facing rural India today. In this respect, it presents us with an opportunity to deal with issues that have been neglected and even been actively ignored for too long.