“The growing trend of cancer shows that it is an epidemic. Almost every family knows of one patient. And we [India] are working on just one side of the problem, which is building cancer hospitals,” said Dr Vishal Rao, a surgical oncologist in Bengaluru. “Why aren’t we trying to reduce it” is his primary question.
But to do that, doctors first need to know the nature of the problem they are dealing with – where is cancer dominant, what is the disease burden, what kind of cancer is it. Answers that could then help estimate the number of hospitals needed, the preventive plan, cancer research and treatment planning. According to the GloboCan report 2012, about 28 lakh cases of cancers are prevalent in India at any point of time, claiming about 6.8 lakh patients every year.
“Why is thyroid cancer more prevalent in Dakshina Kannada and esophageal in the northern parts? How do we come to know of these patterns? We don’t know,” said Rao. “Then we need to know the whys – habits, diet, or environmental conditions [pesticides, pollution, etc]. Right now we have zero strategy. Isn’t it important to know the denominator to plan treatment as well as prevention?”
Now bit by bit, parts of India are waking up to the need of cancer maps and making cancer reporting mandatory.
Model for the country
Karnataka took the first step at solving Rao’s problem in end July when it made cancer a notifiable disease in the state. What this means is that if you are a doctor or a pathology lab or health worker and you diagnose a cancer of any body part, you will be required to send details to the government, to monitor the incidence of cancer.
“This category [notifiable dieases] started in the British era, when any doctor of health worker would have to report incidences of contagious diseases such as small pox, cholera,” said Prashant NS, faculty at Institute of Public Health, Bengaluru. “Many of us have said that such systematic reporting needs to be done for cancer.”
Prashanth adds that what we really need are such large geography-based cancer registries and not just counts from a few hospitals. At present, India has 29 Population-Based Cancer Registries under the National Cancer Registry Programme, most of which are in urban areas. Together they cover a mere 8% of the population. An Indian Council of Medical Research report from 2011, which included first-time data from new PBCRs in East Khasi Hills in Meghalaya, Aizawl in Mizoram and West Kamrup in Assam, showed that these places have the highest rates for cancers of the upper aerodigestive tract, particularly of oesophagus, hypopharynx and larynx. Karnataka is the fourth state to order this notification, after Tripura, Punjab and West Bengal. The Centre has not made any move to make it nationally mandatory.
Rao, who was one of the key advisors to the Karnataka government on making cancer a notifiable disease, says it should be the model for the whole country. He is very clear that a voluntary scheme will never work.
Clear implementation plan
It was Atul Kumar Tiwari, principal secretary, Health and Family Welfare Department, who found a way to make the scheme mandatory. The problem was there is no national level legislation under which states can notify cancer. But Tiwari found a way to get both public and private hospitals and clinics under the ambit of the Karnataka order.
“We needed to get the health establishment to report but couldn’t find any Act or rules to do this. We finally found a way through the Karnataka Municipal Corporations Act, 1976,” said Tiwari, who has seen three cancer-related deaths in his family. “Unless you capture the data on how big the problem is, it just seems like hearsay. Karnataka sees 50,000 new cancer cases a year and the prevalence of cancer is about 1.5 lakh patients in a year.”
What Karnataka does have is a clear implementation plan. “This detailed plan should be followed by all states. The other notifications don’t have any implementation strategy behind it,” said Rao, who is also a member of the Karnataka government’s high-powered committee on tobacco control.
Prahlad Duggal, an Amritsar-based surgical oncologist, echoes the sentiment. “Nothing has started on ground [Punjab notified it in 2012]. We got some documents that all pathologists need to report but nothing is being done by the state,” said Duggal. West Bengal is on the same track. Though it passed the order in 2010, the Indian Council of Medical Research report shows that response and compliance has been sub-optimal and the PBCR in Kolkata continues to be the only active registry.
Ensuring accountability
Karnataka’s plan to map cancer rates goes right to the village level. “Say someone suspects a growth, goes to an anganwadi worker, whom we are also trying to involve,” said Rao. “That worker will then have to refer this to a sub-centre, then to a Primary Health Centre and onwards to a pathologist who will have to report it to the government. This will improve coverage drastically. It shows that the state is at least not shying away from health responsibility. We spoke to the other states that have passed this notification but they haven’t been able to implement it effectively.”
The state will constitute a Cancer Control Committee to oversee the implementation. In cases of lapses in reporting, the director of the hospital, diagnostic centre or institute will be answerable to this committee and be liable to punitive action. “Now it becomes his responsibility and the responsibility of every doctor in state, whether ayurvedic or allopathic or homeopathic or unani, to diagnose cancer. This is only in Karnataka,” explained Rao.
But that is the input end. At the output end, the state will be receiving these reams of data that will need to be parsed. Here, the Indian Council of Medical Research (which is also responsible for maintaining confidentiality) will analyse the data. It will be aided in this task by the National Informatics Centre and Rajiv Gandhi University. The software is, at present, being developed by the National Informatics Centre. Tiwari admits that it will be a huge challenge to go to all dispensaries and hospitals to ask them to do this and will need training. He and Rao hope to have a body of evidence of this monster of a disease in two years and spot cancer trends within a year.
“Getting the data though is possibly the easiest thing to do,” said Tiwari. “Much harder is tobacco control that needs social changes. But we hope this will strengthen our work on tobacco control.”
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But to do that, doctors first need to know the nature of the problem they are dealing with – where is cancer dominant, what is the disease burden, what kind of cancer is it. Answers that could then help estimate the number of hospitals needed, the preventive plan, cancer research and treatment planning. According to the GloboCan report 2012, about 28 lakh cases of cancers are prevalent in India at any point of time, claiming about 6.8 lakh patients every year.
“Why is thyroid cancer more prevalent in Dakshina Kannada and esophageal in the northern parts? How do we come to know of these patterns? We don’t know,” said Rao. “Then we need to know the whys – habits, diet, or environmental conditions [pesticides, pollution, etc]. Right now we have zero strategy. Isn’t it important to know the denominator to plan treatment as well as prevention?”
Now bit by bit, parts of India are waking up to the need of cancer maps and making cancer reporting mandatory.
Model for the country
Karnataka took the first step at solving Rao’s problem in end July when it made cancer a notifiable disease in the state. What this means is that if you are a doctor or a pathology lab or health worker and you diagnose a cancer of any body part, you will be required to send details to the government, to monitor the incidence of cancer.
“This category [notifiable dieases] started in the British era, when any doctor of health worker would have to report incidences of contagious diseases such as small pox, cholera,” said Prashant NS, faculty at Institute of Public Health, Bengaluru. “Many of us have said that such systematic reporting needs to be done for cancer.”
Prashanth adds that what we really need are such large geography-based cancer registries and not just counts from a few hospitals. At present, India has 29 Population-Based Cancer Registries under the National Cancer Registry Programme, most of which are in urban areas. Together they cover a mere 8% of the population. An Indian Council of Medical Research report from 2011, which included first-time data from new PBCRs in East Khasi Hills in Meghalaya, Aizawl in Mizoram and West Kamrup in Assam, showed that these places have the highest rates for cancers of the upper aerodigestive tract, particularly of oesophagus, hypopharynx and larynx. Karnataka is the fourth state to order this notification, after Tripura, Punjab and West Bengal. The Centre has not made any move to make it nationally mandatory.
Rao, who was one of the key advisors to the Karnataka government on making cancer a notifiable disease, says it should be the model for the whole country. He is very clear that a voluntary scheme will never work.
Clear implementation plan
It was Atul Kumar Tiwari, principal secretary, Health and Family Welfare Department, who found a way to make the scheme mandatory. The problem was there is no national level legislation under which states can notify cancer. But Tiwari found a way to get both public and private hospitals and clinics under the ambit of the Karnataka order.
“We needed to get the health establishment to report but couldn’t find any Act or rules to do this. We finally found a way through the Karnataka Municipal Corporations Act, 1976,” said Tiwari, who has seen three cancer-related deaths in his family. “Unless you capture the data on how big the problem is, it just seems like hearsay. Karnataka sees 50,000 new cancer cases a year and the prevalence of cancer is about 1.5 lakh patients in a year.”
What Karnataka does have is a clear implementation plan. “This detailed plan should be followed by all states. The other notifications don’t have any implementation strategy behind it,” said Rao, who is also a member of the Karnataka government’s high-powered committee on tobacco control.
Prahlad Duggal, an Amritsar-based surgical oncologist, echoes the sentiment. “Nothing has started on ground [Punjab notified it in 2012]. We got some documents that all pathologists need to report but nothing is being done by the state,” said Duggal. West Bengal is on the same track. Though it passed the order in 2010, the Indian Council of Medical Research report shows that response and compliance has been sub-optimal and the PBCR in Kolkata continues to be the only active registry.
Ensuring accountability
Karnataka’s plan to map cancer rates goes right to the village level. “Say someone suspects a growth, goes to an anganwadi worker, whom we are also trying to involve,” said Rao. “That worker will then have to refer this to a sub-centre, then to a Primary Health Centre and onwards to a pathologist who will have to report it to the government. This will improve coverage drastically. It shows that the state is at least not shying away from health responsibility. We spoke to the other states that have passed this notification but they haven’t been able to implement it effectively.”
The state will constitute a Cancer Control Committee to oversee the implementation. In cases of lapses in reporting, the director of the hospital, diagnostic centre or institute will be answerable to this committee and be liable to punitive action. “Now it becomes his responsibility and the responsibility of every doctor in state, whether ayurvedic or allopathic or homeopathic or unani, to diagnose cancer. This is only in Karnataka,” explained Rao.
But that is the input end. At the output end, the state will be receiving these reams of data that will need to be parsed. Here, the Indian Council of Medical Research (which is also responsible for maintaining confidentiality) will analyse the data. It will be aided in this task by the National Informatics Centre and Rajiv Gandhi University. The software is, at present, being developed by the National Informatics Centre. Tiwari admits that it will be a huge challenge to go to all dispensaries and hospitals to ask them to do this and will need training. He and Rao hope to have a body of evidence of this monster of a disease in two years and spot cancer trends within a year.
“Getting the data though is possibly the easiest thing to do,” said Tiwari. “Much harder is tobacco control that needs social changes. But we hope this will strengthen our work on tobacco control.”