It was in 2008 that the apex health research body in India, the Indian Council for Medical Research (ICMR), recommended making cancer a notifiable disease in the country.
Fourteen years later, 15 states have made it mandatory. In 13 other states, which include the most populous ones, the recommendation remains neglected.
While Tripura was the first state, 14 years ago, to make cancer a notifiable disease, Andhra Pradesh recently became the 15th to do so.
Other states that have taken the same course include Haryana, Karnataka, Kerala, Tamil Nadu, Punjab, West Bengal, Assam, Mizoram, Sikkim, Gujarat, Manipur, Rajasthan and Arunachal Pradesh.
The country’s most populous states, Uttar Pradesh, Bihar and Maharashtra are yet to join the group. At the central level, too, there is no sign of such a move happening anytime in the near future.
This, despite the fact that the ICMR, back in 1981, started the National Centre for Disease Informatics and Research and the National Cancer Registry Programme (NCRP) to estimate the real burden of cancer in the country.
As of now, this report includes data from 96 hospital-based cancer registries across the country.
Experts like Dr Pankaj Kumar Garg, professor and head, department of surgical oncology at Shri Guru Ram Rai Institute of Medical and Health Sciences and Shri Mahant Indiresh Hospital, Dehradun, say that assessment of the true burden of cancer is essential for plan allocation and utilisation of health resources for cancer control and prevention.
“Cancer notification is required to assess the true incidence of cases as it mandates the registration of all cancer cases in India,” he said. “Unfortunately, there is no pan-India law for mandatory cancer notification.”
As per the NCRP report for 2021, nearly 1.39 million new cancer cases were recorded in India in 2020 and more than 8.5 lakh patients succumbed to the disease.
Experts such as Dr Ravi Mehrohtra, who has headed the National Institute for Cancer Prevention and Research in the past, believe these figures may be far lower than the actual numbers.
Also read I MC Exclusive | Hospitals to set up panels to vet requests for aid to treat rare diseases
Knowing true numbers crucial
According to Mehrotra, as India has a heterogeneous population, it requires a proper analysis of the disease burden, with extensive research to improve the treatment outcomes.
“Most treatment guidelines are based on studies conducted in the Western population. We need a reliable denominator to devise our own protocols,” he said.
He also pointed out that other notifiable diseases, such as tuberculosis, have shown how standard treatment guidelines can be formulated and lead to significant improvement in outcomes.
Dr Prashant Pawar, onco-surgeon with HCG ICS Khubchandani Cancer Care Centre in Mumbai, stressed that mandatory cancer notification provides prompt and appropriate reporting, which further allows for better management of cancer by monitoring changes in the incidence and identification of risk factors and causes, with better utilisation of resources.
This notification data can be used to compile the national cancer registry, said Pawar, and can further help clinicians, health planners and researchers in the better management of patients.
What it entails
Once declared notifiable, each medical college and district hospital must create its own Hospital Based Cancer Registry (HBCR), with either the medical oncologist, surgeon, physician, radiation oncologist, pathologist or chief medical officer in charge.
The person in charge must be trained in data collection and entry in a prescribed format and each state must set up its own state cancer registry, which receives and processes the information from the person in charge. The state cancer registry also trains healthcare workers regarding the seven danger cancer signals and their appropriate management.
Undergraduate and post-graduate medical students should be made aware of the notification programme by incorporating this into their curriculum. In addition, there is also emphasis on awareness among the lay public on preventing cancer.
Also, supervision of the whole system has to be handed over to an independent authority or non-governmental organisation concerned with cancer care which monitors data collection, diagnostic procedures and follow-up care and awareness.
Also read I Blood test that can detect breast cancer, available in India now
Planning services for better care
Pawar said this move will help in monitoring and evaluating the effectiveness of health programmes, such as cancer screening and treatment, monitoring of patterns of prescribing drugs and planning of services for better care.
Dr Vishal Rao, director, head and neck surgical oncology and robotic surgery and dean of the Centre of Academic Research at Healthcare Global Cancer Centre in Bengaluru, said that more than half of the developed nations have made cancer a notifiable disease to address the need to check and minimise the growing burden of cancer on health and economy.
Avoiding accountability?
“What the eyes do not see, the mind does not know,” said Mehrotra. The Union health ministry and many states are not interested in making cancer a notifiable disease, probably to avoid accountability, he said.
“Even though the notification system may not be perfect, it does add a certain responsibility on the government for the treatment and follow-up regimen of patients, which may be fairly expensive,” he said. “So by not making cancer notifiable by law, the Centre is avoiding that accountability,” he said.
An e-mail sent to the Union health ministry seeking its response remains unanswered.
