Questioning priorities

AIDS is huge political issue, both in India and globally. Donors clamour to take up AIDS programmes in politically important countries and regions. Take the case of funding the AIDS programme in the newly liberated East Timor. Initially many donors expressed interest to set up the country’s AIDS programme. It has sparked a public health debate as many health specialists question whether donors are too focussed on combating HIV/AIDS while neglecting more basic needs in the impoverished country. "It makes much more sense for donors to concentrate on bread and butter issues" such as reducing infant and maternal and expanding immunisation, says one doctor in Dili. According to UN officials, so far only seven known AIDS cases within East Timor’s 779,000 people has been detected. Meanwhile the US Agency for International Development (USAID) and Australian Agency for International Development Aid (AusAID) have developed comprehensive programmes, investing in US $2 million and US $590,000 respectively.

"We know it’s extremely important to pay attention to the epidemic in the early stages" says a USAID spokesman. Adds a spokesman from AusAID "There’s fair chance that the figure of seven is an underestimate." Yet with no reliable data, consultants are already rushing ahead to devise elaborate programmes. "The cart is very much before the horse at this stage," says the Dili doctor.

On August 8, 2000 the Ministry of Health and Family Welfare and its nodal agency for managing the AIDS programme — the National AIDS Control Organisation (NACO) — criticised the Joint United Nations Programme on HIV/AIDS (UNAIDS) — for what it says are "exaggerated" figures of HIV-infected people in the country. With increasing pressure from the parliament, the then health minister, C P Thakur accused UN agencies of mis-reporting facts and creating confusion. "I am at a loss to understand how there can be so many different estimates by different UN agencies," an anguished Thakur told reporters at a press conference. Thakur said the NACO, which is supervised by his ministry, generates epidemiological data from field studies and it would be "advisable" for UN agencies to use these figures.

The government's main objection was to the figures in the latest UNAIDS report on the global HIV/AIDS epidemic, which show that 310,000 Indians died of AIDS in India in 1999. However, the report did not explain the source of the figure. Six years earlier, NACO had officially questioned the basis on which UNAIDS calculated that India then had 1.75 million people infected with the AIDS virus. Explaining how UNAIDS arrived at the figure for the number of Indians who died of AIDS in 1999, Gordon Alexander, a senior UNAIDS official in India said. "We arrived at the number of 3.1 million using an internationally accepted model based on experience in various parts of the world." However, because there are huge differences in the assumed parameters, to begin with, the idea of extrapolating and applying different basal conditions in 'universal models' to a 'specific country' is questionable. The numbers that thus would be arrived at would be unreliable. According to Alexander, while there was room for discussion on the figures, the idea was to "emphasise the need for prevention and support and a care system for HIV patients."

Official Indian estimates for the year put the number of AIDS deaths to a modest 11,000, though some experts have questioned the reliability of this figure too. The health minister admitted that these were projections. "We have to develop a proper model for estimation of AIDS deaths based on the number of infections in the country," he said. "It is not always easy to get actual reports on deaths as the cause of death is always recorded as due to opportunistic infections like tuberculosis, meningitis, pneumonia etc."

About the number of estimated cases of AIDS, NACO said that there were as many as 3.5 million reported HIV infection cases in the country. However, NACO's former director Prasada Rao denied that figure and attributed it to a "typographical error." If India did have the hundred of thousands of HIV-infected people as estimated, there should have been many more cases of people afflicted with diseases that mark the final phase of full-blown AIDS. Rao said there was no evidence of this happening anywhere in India.

Some public health groups have an explanation for the confusion over AIDS statistics. According to Purshottaman Mullolli of the Joint Action Council (JAC), the "conflicting statistics" could be "attributed to... a deep conspiracy to inflate figures in order to justify the expending of all too readily available loans from the World Bank." An umbrella group of NGOs working in the areas of human rights and HIV, the JAC has campaigned against a NACO programme that targets so-called high-risk groups, leading to their social ostracisation. "The fact is that far from alleviating problems, a scare is being created in the country," he said. This has led to the import of expensive AIDS-related medical equipment even as basic health services in the country are starved of essential supplies, he added.

Two years after this episode, NACO, UNAIDS, and host of other programmes that run in the country still lack information on the number of people that suffer from AIDS in India. NACO has proposed to strengthen its annual National Sentinel Surveillance Survey by including sexually transmitted disease clinics, antenatal clinics, intravenous drug users sites and homosexual sites.

Earlier this year, the health ministry said there were 3.97 million people infected with the virus that could lead to AIDS. The figures, derived from a report by the ministry’s Sentinel Surveillance Survey, said the spread of the virus had been contained. However a report released by the Futures Group International for USAID says the cumulative new HIV cases for 2000-2025 in India range from 30 million (mild epidemic) to 140 million (severe epidemic).3 Health minister Shatrughan Sinha has been quick to dismiss such figures. Especially with more funds coming in from the Bill and Melinda Gates Foundation giving NGOs more reasons to rev up their strident attack.

Statistics is a weapon in political battles over social problems like AIDS. Advocates take different positions and use numbers to make their points. It is common to hear a debate with contradictory statements – "It’s a big problem!," "No, it’s not!". The debate continues.

Cancer
Yet another compelling evidence of how the government plays with statistics is seen in the data on cancer released by Indian Council for Medical Research (ICMR) in November 2001. The National Cancer Control Programme (NCCP) says that 700,000 new cases of cancer are detected each year and around 300,000 people die. It predicts that more than 1.4 million people will be suffering from cancer by the year 2026, listing environmental conditions as one of the most important reasons of the prevalence of cancer in the present era. In 1965, the K N Rao Cancer Assessment Committee had recommended the establishment of a National Cancer Registry Programme (NRCP), which would provide the mortality and morbidity data and help study the distribution of cancer in different parts of India. It was only in 1972, 17 years after its recommendation that NRCP was set up. There are two main types of cancer registries in the country — the Population Based Cancer Registry (PBCR) that provides information about the disease in an area and the Hospital Based Cancer Registry (HBCR) that provides information about the stage at which the patient enlists in a hospital and the treatment that is administered. It would be safe to assume that the data available on cancer would be updated, concise and precise. Unfortunately that is not the case. The last report that was released from the ICMR's stable was in 1992 and it contained 13-year-old data.

This kind of data is certainly not in a position to aid the government in devising prevention strategies.4 The ICMR cancer registry suggests that cancer is rising in India, but the capacity of health facilities in government hospitals is sufficient to meet the increasing numbers. If this is so, then why is it that the number private cancer hospitals have increased from 11 in 1990 to 42 in 2001?5

Death, birth and other things
Roughly, how many people die in India every year? The Registrar General of India that documents the numbers of deaths in hospitals or those reported to municipal offices provides the only authentic record. Unreported deaths never make it to the final list. Yet figures for death and birth rates are projected and guesstimates and calculated based on decadal averages. The number of actual deaths in epidemics is not known.

Often people themselves over- report deaths and disease. An interesting anecdote has been mentioned in P Sainath’s seminal book, Everybody loves a good drought. In a village called Bansajal, in Sarguja district of Chattisgarh, the total number of deaths from all causes was eight as against the reported figure of 25. On being questioned, the sarpanch (village head) responded, "Unless we have news of people dying like flies, we don’t get a single hand pump". In the absence of actual data, this kind of tactics brings relief but shifts the focus from the real problem.6

System Error
The Ministry of Statistics and Programme Implementation (MOSPI) is responsible for gathering data from the grassroots and compiling them for various ministries. The Central Statistical Organisation (CSO) coordinates and lays down norms and standards for statistics and data collection. It also provides grants to various non-governmental organisations for undertaking research and surveys. The National Statistical Survey Organisation (NSSO) conducts economic census surveys. The NSSO has a specialised Survey Design and Research Division (SDRD) and a Field Operations Division (FOD).7

At the national level, the Central Bureau of Health Intelligence (CBHI), under the Directorate General of Health Services (DGHS), within the Ministry of Health and Family Welfare, is the sole organisation, which deals with the collection, compilation, analysis and dissemination of the information on health conditions in the country. It covers various aspects of health including health status, health resources, utilisation of the health facilities etc. It produces the Health Information of India, a compilation of data from the Registrar Generals Office’s, NSO, NFHS, CSO, and reproductive and child health surveys. Apart from these inputs, it compiles reports that it has received on various diseases and health infrastructure figures from the states. The main problem with the Health Information of India is that all it only presents is data from government hospitals. Private hospitals that cater to 60 per cent of India’s urban demands and about 40 per cent of the rural needs are not covered. Though private hospitals need to report epidemics and outbreaks of at least 16 notifiable diseases under the state law, very few outbreaks are ever reported by private hospitals. These diseases include tuberculosis, cholera, diarrhoea, malaria, rabies and other infectious and communicable diseases. In Mumbai city for example, when leptospirosis broke out in 2000 and 2001, patients went first to private clinics, which had never encountered a case of the disease earlier. As a result they treated patients for malaria, which led to many deaths. Had the municipal body been notified of this, an epidemic could have been prevented.