by Rupa Chinai
– India –
On August 5, 2008 a young “HIV-positive” couple in Mumbai – Babu Ishwar Thevar, 39, his wife Amothi, 33 – committed suicide after killing their three children, sons Venkatesh and Mani, ages 10 and 8, and daughter Mahalaxmi, 6. They had just discovered that their youngest child too “was infected by the deadly virus.”
The stigma of AIDS has taken many lives long before the disease itself claimed them, but the extent of such suicides, and the reasons behind them, have rarely come to public knowledge. AIDS has a critical link to the immune system and the factors that influence it. Society’s limited understanding of this disease is causing innocent people to pay a terrible price.
At a time when we do not have a cure for AIDS, we cannot assume to know its cause. Increasingly across the world, there are voices questioning the perpetuation of a “Frankenstein that has been blown out of all proportion.” They question the narrow approach to a single disease, especially the huge financing for AIDS over all else in basic health care. Though welcome and long overdue, this debate must now move further. Our approach to this disease needs to change for the sake of families like that of Babu and Amothi Thevar.
In 1993, I was one of the first health correspondents in India to serve on the staff of a leading daily English language newspaper. I had just completed a journalist fellowship at the Harvard School of Public Health in Boston, and came back deeply influenced by teachers such as the late Dr. Jonathan Mann, a public health expert with renowned international experience. He believed that the discovery of a new disease like AIDS was an opportunity to scrutinize fundamental issues – such as the link between disease and poverty, the need to examine the workings of the entire health system, access to preventive health information and the means to support health in all its physical, mental and social dimensions.
Based in Mumbai, I witnessed the unfolding of the “HIV/AIDS epidemic” in what was dubbed the “AIDS capital of India” and extensively reported on it over the course of a decade. At that time, the medical community shunned treatment of this disease. As a result, patients were in the stranglehold of a small mafia of doctors who took every opportunity to fleece, frighten and even conduct illegal vaccine trials on their patients. Denied any support, the patients believed that HIV meant death. Mercifully, that stranglehold was subsequently broken when heightened international focus widened the circle of medical practitioners and NGOs.
One of the few but important gains of the focus on AIDS in India has been the emergence of some genuine community-based groups for the first time in public health. Many of them provide an interface between marginalized groups, the wider community and public health services. This process empowers those who were previously voiceless and ignored, and who must continue to receive priority support.
This success however, is marginal in comparison to the enormous havoc this narrow and ill-conceived focus on HIV/AIDS has rendered to India’s public health system. There is an urgent need to expand the treatment to a comprehensive, primary based approach – one that takes into account the total health needs of communities in developing countries that cope with an already enormous burden from other killer diseases.
Contributing to this climate of fear and myopic focus were the myths perpetuated – in particular, AIDS fatality figures were severely inflated. The past two decades have seen warnings about the huge numbers of HIV/AIDS infected persons who would “die like flies.” The projections, provided in particular by the CIA, UNAIDS and the WHO, ranged from five to twenty million estimated cases in India alone. Local and international groups that questioned the high numbers faced severe criticism and marginalization.
Ultimately, the skeptics proved right. The AIDS lobby has since backtracked on its pronouncements without acknowledging the extent to which they have misled the public. UNAIDS has now reduced world HIV estimates from 39.5 million to 33.3 million but still calls for dramatically increased AIDS spending – from $9 million today to $42 billion by 2010 and $54 billion by 2015.
A report by India’s National Family Health Survey (NFHS-3), tabled with the Indian government in 2007, was the first to provide data on what is happening at the general community level and it forced international agencies to scale down their figures. Estimates of India’s HIV/AIDS prevalence are now 2.5 million, a significant decrease from the earlier Indian government estimate of over five million infected.
While HIV causes only 3.7 percent of global mortality, it receives 25 percent of all health aid. Additionally, it receives a large portion of domestic expenditure, which often exceeds domestic health budgets, says Robert England, chairperson of the Health Systems Workshop, an independent think-tank promoting comprehensive primary health systems reform in developing countries.
It is important to analyze how these high projections came about in the first place, and to ask how those in positions of authority accepted these figures without asking the basic questions voiced within the community. It is vital to know what is happening on the ground and discover for ourselves India’s true experience with this disease.
Poverty & Malnutrition
During a 2008 media workshop with Asian and African journalists in Geneva, the World Health Organization placed blame for the flawed fatality projections on the home countries. “The WHO has no mechanism for monitoring numbers and its estimates depended on the data supplied by the Indian government,” held the WHO’s team leader for corporate communications. Policymakers in Delhi and Washington had applied universal yardsticks without examining local geographical and cultural traditions of health-seeking behavior in developing countries.
India’s HIV/AIDS surveillance system drew samples from the following sources within public sector institutions: Clinics for antenatal mothers; STD (Sexually Transmitted Diseases) treatment centers; blood banks; and NGO groups catering to the needs of “men who have sex with men” (MSM), commercial sex workers and their clients.
The problem with samples taken from these sources is that these segments of society do not represent the general population – they represent high-risk groups. While pregnant women attending antenatal clinics in public hospitals would come from the general population, they still represent the lower socio-economic strata of society. The picture they show does not portray the total image with its manifold nuances.
Typical patients who seek the services of the urban public sector in India are migrants who come to the cities and live in stressful conditions. They suffer from malnutrition and carry a heavy burden of disease that has compromised their immune systems. If they were to undergo an HIV test, it is likely that it would show a false positive result because of a cross-reaction due to the presence of other infections commonly found in developing countries.
Data drawn from the public sector connects with another Indian peculiarity. Studies have revealed that 70 percent of Indians turn first to the private sector when they suffer from a health problem. They do so because the primary health service offered by the government sector is neglected and in shambles. It is only when they run out of money or suffer the consequences of wrong diagnoses that patients turn to public sector hospitals, resulting in the over-running of referral services by patients suffering from minor problems.
Thus, key information missing in the HIV/AIDS surveillance systems is comparative data drawn from the private sector services, which covers the majority of India’s population. The class of people who come here are better nourished and healthy. HIV testing done on them may demonstrate different results.
Such comparative data is readily available with all leading private hospitals in Mumbai, who subject their patients to an HIV test on admission. The administrator of one leading private hospital in the city however revealed that the number of HIV patients found in their hospital is, in fact, not large. He says their numbers are restricted to a small group of patients who shop around for services in the city’s private hospitals because of stigma. Strangely, the national surveillance system has completely left out this vital sector from its reckoning.
Why are researchers and scientists not interested in comparing the private and public sector data on HIV/AIDS? What makes the better nourished, wealthier class of people less vulnerable to AIDS and other infectious diseases, in comparison to the poorer segment of society?
– This is the first of a three-part series focusing on the Indian experience with AIDS.
Next week, Rupa will address the issues surrounding misdiagnosis. – Ed.
About the Author
Rupa Chinai is an independent journalist based in Mumbai, India. She has been writing on health and development issues for the past 25 years and her work has appeared in some of India’s leading English language daily newspapers and websites as well as foreign publications. Her basic education was obtained in Mumbai and opportunities for further studies and exposure came through prestigious awards such as a journalism fellowship from the Harvard School of Public Health in the US, amongst others. She is co-author of a book on rural women’s health issues and is currently engaged in writing a book on northeast India, based on 20 years of travel and work in that region.