We are not supposed to keep on publishing the report," says N K Ganguly, director-general, icmr. "We are supposed to carry out research and cannot spend money on a particular project," he justifies. It is as if icmr's cancer data is protected under the Officials Secrets Act. Repeated requests to gain access to information fall on deaf ears. Regional registries collect information on cancer incidence and publish annual reports. But most of them do not make it public. "Please contact icmr to get the reports," says B M Nene, chairperson, Rural Cancer registry, Nargis Dutt Memorial Cancer Hospital, Barsi . " icmr will give you the information of Delhi registry," says Kusum Verma, project chief of the Delhi Cancer Registry.
It is not just the lack of published data that rankles but also the tortuous ways of icmr when it comes to providing information about the ncrp. A questionnaire sent by Down To Earth to the director-general of icmr was supposedly forwarded to the project coordinator who in turn forwarded it to the ncrp headquarters at Bangalore. So far, there has been no reply. "The trends do not change so quickly," claims Ganguly, suggesting that the earlier data still holds good. But data shows that cancer trends are changing very rapidly. In Nagpur for example, a sudden rise in cases of leukemia and lymphomas in early 1990s can be seen. In Pune, during 1986-1990, cancer of the larynx in men topped the list but within the next four years, it became the third most common cancer in the city.
"Data cannot be published in the form given to us and therefore it takes time to publish it," says Ganguly, overlooking the fact that the data is given to them in a standardised format. Even the forms for data collection were carefully designed -- the methodology was decided in Mumbai in 1980. This was based on the Mumbai cancer registry, which existed even before the ncrp was set up.
While official reasons for the delay are not available, some other reasons (read excuses) for the non-availability are doing the rounds. The data is being "cleaned" by the experts, the data is being reanalysed on the basis of the new population figures of the census. Grapevine has it that the delay is also due to some "internal politics". "Publishing data is just not a priority with the authorities," rues Surendra Shastri, head, department of preventive oncology, tmc, Mumbai.
The epidemiological studies on cancer in India has a number of shortcomings. One of the biggest shortcoming of the ncrp is the small population it covers. "India is a vast country -- people in different areas are exposed to different types of environmental conditions and have totally different lifestyles," says G K Rath, head of department of radiation oncology, irch. Shastri has an interesting example of how an independent survey can reveal the inadequacies of icmr's data collection. "During the preliminary survey on cervix cancer carried out be tmc in the slums of Mumbai, we found that the number of cases reported by the Mumbai Cancer Registry was nearly 20 per cent higher that what we found out," says Shastri.
Another study which reveals why icmr needs to go in for far more thorough data collection was conducted by the department of preventive oncology of tmc on cancer incidence in slum areas of Mumbai. The incidence of cancer was found to be shockingly high. In 14 screening camps, 1,207 women were screened for cancer and 22 of them tested positive. There are hundreds of slum areas in the country and the cancer incidence is unimaginable. "Only 5 per cent of the population is covered by the programme," adds Rath. In the us, the population covered is 95 per cent. "The data is required only on sample basis for assessing the various parameters in different geographical locations," refutes C P Thakur, Union minister for health and family welfare (mohfw). "It is not necessary to have registries for this purpose alone in all the locations while we have other priorities," he insists. When quizzed why icmr does not publish data regularly, Thakur says, " icmr is anyway not supposed to publish the data."
Another weakness is that the data is never analysed as to why the cancers are occurring. Farooq Ahmad Matta, physician at the Jawaharlal Nehru Medical Hospital, Srinagar, cites an example: Data suggests that cancer of the gall bladder is increasing in the northern India. Generally a diet rich in cholesterol is said to be the culprit. Though the diet in Jammu and Kashmir is also rich in fats, there are not too many gall bladder cancers cases. This suggests that factors other than the diet could be responsible for the cancer of the gall bladder.
"The reports are also poorly analysed," says Shastri. For example, it is said that the incidence of cancer is much higher among the Parsi community. But the fact that the average lifespan of a Parsi is many times higher than others is not taken into consideration. The data may be overestimation or an underestimation.
The research is absent, the data is locked out of sight. Meanwhile, cancer wards across the country are getting noisier. If only the icmr could listen.