Imti Longchar
Over and over again, health experts and oncologists have been strongly urging the Government of India to declare Cancer a notifiable disease.
A notifiable disease is any disease that is required by law to be reported to government authorities. The collation of information allows the authorities to monitor the disease and provides early warning of possible outbreaks.
As early as in 2008, the Indian Council for Medical Research (ICMR) recommended making cancer a notifiable disease in the country.
The Parliamentary Standing Committee on health and family welfare in 2022 had even submitted a report to the Rajya Sabha recommending that cancer should be declared as a ‘notified disease’ citing many unreported cancer deaths in India. The committee also noted that this hinders data collection due to the ambiguity of the actual cause of death and called for a CoWin-like portal for registration.
The Committee made these recommendations in the 139th report on “Cancer Care Plan and Management: Prevention, Diagnosis, Research & Affordability of Cancer Treatment” submitted to the Chairman of the upper house of Parliament.
Just recently, on March 4, 2024, at the Indian Chambers of Commerce & Industry (FICCI) Roundtable for the Eastern Region,’ held under the aegis of the Ministry of Health & Family Welfare, experts recommended that Cancer should be made a notifiable disease so that accurate incidence and effective follow up can be assured.
The terror is there for all to see, as Cancer cases continue to rise at alarmingly and shows no sign of abating. The Indian Council of Medical Research (ICMR) in a recent study projected 15.33 lakh new cancer cases per year and a mortality rate of approximately 8 lakh per year.
According to another study titled ‘Cancer incidence estimates for 2022 & projection for 2025: Result from National Cancer Registry Programme, India’ published in the Indian Journal of Medical Research, the estimated number of incident cases of cancer in India for the year 2022 was found to be 14, 61, 427 (crude rate:100.4 per 100,000). The incidence of cancer cases is estimated to increase by 12.8 per cent in 2025 as compared to 2020.
A new study published in The Lancet Regional Health Southeast Asia journal revealed that India registered about 12 lakh new cancer cases and 9.3 lakh deaths in 2019, becoming the second highest contributor to the disease burden in Asia for that year.
Researchers found that India, along with China and Japan, were the three leading countries in Asia in terms of number of new cases and deaths, where they say cancer has become a more significant public health threat with 94 lakh new cases and 56 lakh deaths in 2019.
According to the Global Cancer Observatory, India ranked 3rd globally in terms of new cancer cases in 2020, behind China and the United States. GLOBOCAN predicts a staggering 57.5% rise in cancer cases in India by 2040, amounting to an increase of 2.08 million cases.
The insistence on mandating Cancer a notifiable disease is to ensure accurate data collection, shedding light on the true burden of cancer within these communities. This data would be crucial for policymakers to allocate resources, implement targeted cancer prevention and treatment programs.
Health experts also pointed out that India is grappling with the absence of information about cancer and inaccurate data regarding the number of individuals affected by this condition.
They stated that India’s current population-based cancer registry suffers from limited coverage and an urban bias due to inadequate awareness among rural communities, lack of follow-up and insufficient survival data.
Secondly, notification requirements would facilitate early detection and intervention. In regions with limited access to healthcare services, individuals often seek medical attention only when symptoms become severe, leading to late stage diagnosis and poorer treatment outcomes.
Moreover, notification of cancer cases can spur public awareness and mobilize community action. It can encourage discussions about the risk factor, promote preventive behaviors and empower individuals to seek timely screenings and adopt healthier lifestyle.
In essence, making cancer a notifiable disease in states with inadequate healthcare infrastructure and cancer screening is a critical step towards combating this pervasive threat.
Despite repeated recommendation from health experts, the Centre has ruled out the possibility of declaring cancer as a notifiable disease in the near future while asserting that “Cancer is a type of non-communicable disease. It is not an infectious disease. It doesn’t spread from one person to another or also doesn’t have any community spread. In present circumstances, it may not be declared as a notifiable disease.” (Health Ministry to Parliamentary Committee in its 147th report tabled in Parliament on August 2023).
However, since the delivery of healthcare largely rests with the States with health being a state subject, 15 states have so far mandated Cancer a notifiable disease.
According to a report written by Sumi Sukanya Dutta titled, “What is the true burden of cancer? 13 states in India not even trying to know,” States that have taken the mandate include Andhra Pradesh, Tripura, Haryana, Karnataka, Kerala, Tamil Nadu, Punjab, West Bengal, Assam, Mizoram, Sikkim, Gujarat, Manipur, Rajasthan and Arunachal Pradesh.
It stated that in 13 other states, including Nagaland state, the recommendation is yet to be mandated.
With the second highest incidences of nasopharyngeal cancer globally and the 11th highest cancer incidence rate in India, the situation in Nagaland demands immediate attention.
Nagaland’s healthcare infrastructure is struggling to cope, especially in remote areas where even basic healthcare remains a distant dream. Majority of cancer cases goes accounted for as there is no proper registry and if there is, it barely covers a minute of the population. Then there are a major chunk of cancer patients that goes out of the state for availing treatment.
Recently, a Pathologist at District Hospital Kiphire expressed grave concern over the alarming rise in nasopharyngeal cancer cases followed by thyroid and breast cancer in Kiphire district where the lack of infrastructure and facilities for cancer detection compounds the battle against the disease.
What makes treatment difficult is because majority of patient come for check-up only in the last stages which complicate the case. In addition, lack of definitive diagnostic facilities, people attitude towards health seeking and behavioral approach leads to missing out on many cases thus effecting data, which shows very less case of cancer in Kiphire district.
Patients from Nagaland face immense challenges in accessing timely diagnosis and treatment, exacerbating their suffering and reducing their chances of survival.
The National Cancer Control Programme (NCCP) page in the Department of Health and Family Welfare, Nagaland website (nagahealth.nagaland.gov.in) admits that “Nagaland is one of the leading Cancer prevalent states in the country. It is a cancer burdened proven state as there are no facilities for its management, thus compelling 90% of detected Cancer cases to move out of the state in search of treatment causing the state overburdened economically.”
Nagaland cannot afford to overlook the urgency of this situation. The rising burden of cancer, particularly nasopharyngeal cancer, is taking devastating toll on communities across the state. Every life lost to this disease is a tragic reminder of the urgent need for action.
By making cancer notifiable, the state can take several critical steps forward like accurate data on cancer incidences which will enable health authorities to understand the extend of the problem, identify high risk areas, and formulate targeted interventions.
