The price of late diagnoses: Rising cancer mortality

Despite medical advancements, three out of five cancer patients in India do not survive. Delayed diagnosis, treatment costs, and a lack of awareness are key challenges.

Bengaluru: When Ravi* was admitted to the hospital due to persistent fever and breathing issues last year, he did not think that this was due to cancer. The 29-year-old photographer was initially misdiagnosed. 

His symptoms, including sudden weight loss, pain in different parts of the body, and high white blood cell count, prompted doctors in Mangaluru to treat him for a suspected case of a rare blood disorder. He underwent a bone marrow test in October 2024.

“They suspected it was Hypereosinophilic syndrome (HES) because of a very high count of eosinophils in my body. They said my cancer tests came back negative,” he explained. However, his health condition worsened after his doctors reduced his medication dosage, which prompted a relook at his reports, leading his current doctor in Pune to confirm that the ailment was B Cell Acute Lymphoblastic Leukaemia, a type of blood cancer. 

Ravi’s cancer would have been detected early had an accurate diagnosis been made. He noted that his current doctor, who accessed Ravi’s testing slides and reports from Mangaluru, said that cancer cells were present in his body at the time of the first test. 

He is now undergoing treatment according to the Berlin-Frankfurt-Münster (BFM) protocol, a chemotherapy regimen for acute lymphoblastic leukaemia. This would cost him roughly Rs 8 lakh for six months of intense chemotherapy followed by two years of maintenance chemotherapy.

A delayed diagnosis is one of many issues that hinder cancer treatment and survival rates in India. The country has one of the highest rates of cancer incidence and death. 

According to a recent study in The Lancet Regional Health Southeast Asia journal, the Global Cancer Observatory (GLOBOCAN) 2022 estimates that India ranks third worldwide in terms of cancer incidence, after China and the United States. It ranks second, after China, for cancer-related mortality.

India sees at least 14 lakh new cases of cancer annually, according to data from the Indian Council of Medical Research’s (ICMR) National Cancer Registry Programme. 

Between 2012 and 2022, cancer incidence in the country increased by nearly 36%, touching 13.6 lakh cases in 2022. Five years ago, ICMR had estimated that the number of cancer cases in India would increase to 15.7 lakh by 2025.

Additionally, as per GLOBOCAN 2022, three out of every five people diagnosed with cancer succumb to death in the country.

The five most prevalent cancers affecting both men and women — breast, oral, cervical, respiratory, and oesophagus — collectively account for 44% of the cancer burden in India. They also are the leading cause of cancer-related deaths.

Leukaemia remains the most common kind of cancer affecting children aged zero to 14 years, followed by brain cancer in both boys and girls, non-Hodgkin lymphoma in boys and ovarian cancer in girls.

Although the rise in absolute numbers can be because of the large population of people between 15 and 60 years of age and improved diagnosis, the proportionate rise in mortality is a concerning trend.

Regional differences

Apart from these five cancers commonly reported, Professor Dr D Raghunadharao, head of medical oncology, MNJ Institute of Oncology and Regional Cancer Centre, Hyderabad, explained, “We have seen more stomach cancer cases limited to Jammu, Kashmir, some southern states and northeastern states, whereas gall bladder cancer is seen in areas along the Gangetic plains, Gujarat and other parts of western India.”

“Also, prostate cancer cases are being reported in the metropolis of Delhi,” he added. This points to changes in lifestyle and dietary habits, he adds.

Tobacco consumption, which has declined nationally, has increased in northeastern states such as Assam, pushing up the risks of oral, head, neck, and other cancers.

Dr Amal Chandra Kataki, former director of Dr B Borooah Cancer Institute (BBCI), Guwahati, explained that tobacco consumption in the state has increased to about 48% while the national average has dipped from 34% to just over 28%. 

“While the national average of consumption of tobacco in people aged below 18 years is around 8.5%, it is at least 34% in the northeast,” he said. More people are also living longer, which increases the risk of cancer development, apart from lifestyle changes. 

Gender differences

The Lancet study notes that cancer-related mortality has sped up among women over the past decade, and is expected to continue rising over the next 20 years. Breast cancer is the most prevalent cancer among women, accounting for 13.6 per cent of all new cancer cases and nearly 11 per cent of all cancer-related deaths. The top five cancers in women account for over 61 per cent of all cancer deaths annually.

While cervical cancer is now more common in rural areas, breast cancer has become the most common cancer among women in urban areas, especially in metropolitan cities.

According to the International Agency for Research on Cancer (IARC), India is likely to report a 170 per cent increase in the number of new breast cancer cases and a 200 per cent rise in deaths due to breast cancer by 2050.

Another study, titled ‘Economic burden of breast cancer in India, 2000–2021 and forecast to 2030’ noted that there would be an annual increase of about 5.6 per cent in breast cancer cases until 2030, with an associated economic burden averaging at Rs 1,955 crore annually. 

The economic burden was calculated as the sum of the total direct and indirect costs of breast cancer treatment, which the study arrived at by multiplying the estimated number of patients by inflation-adjusted (5 per cent per year) average cost of treatment. Indirect cost estimates were arrived at by calculating productivity losses due to both morbidity and premature mortality in terms of Gross National Income or the GDP per capita multiplied by Disability-Adjusted Life Years (DALYs).

Oncologists point to a lack of awareness about breast cancer signs and self-examination, which leads to a majority of the cases being detected in later stages, which negatively impacts survival outcomes. If detected in the first stage, breast cancer has a 95 per cent cure rate, which sharply falls to about 25 per cent in stage four.

“Stage 1 detections are a little more common in urban areas, as more women are likely to be able to afford mammograms and get annual examinations. In a rural setting, social factors also play a role, where local health facility management, lack of care facilities for women and hesitation to discuss health problems, remain big challenges in detecting breast cancer early,” noted Dr Shamsundar. Additionally, since many women might be anaemic in rural areas, treatment is compromised, he added.

Recognising this burden, the Karnataka health department piloted the Gruha Arogya door-to-door screening programme last year in Kolar to check for breast, cervical, and oral cancers, as well as diabetes and hypertension. The scheme is set to be expanded across the state this year.

Improved IEC (information, education, communication) efforts have had a proven effect in increasing early detection and reducing this disparity in some states, especially Kerala, noted Dr Rekha A Nair, director of Regional Cancer Centre, Thiruvananthapuram. 

“Awareness is high in Kerala, therefore, there is no noticeable difference in terms of cancer detection and treatment rates in the state between men and women and cases are detected earlier compared to other states,” she said.

Gaps in cancer care

Treatment delays are typically due to high costs of treatment, regional disparities, inadequate infrastructure and expertise, lack of access to affordable care, and late-stage detections pushing up mortality risks. For example, out of a total of 62 Regional Cancer Centres (RCCs) in India, there are only eight in the northeastern part of the country, as opposed to 18 in south India. Even within states, there is an abject lack of specialists at the taluk level.

Most doctors note that less than 10 per cent of cancer cases are detected in stage 1, and most are detected in stages 2 and 3. This is likely because of a lack of a uniform screening programme across the country for the early detection of cancer markers. 

“Less than 10 per cent of the population is subjected to some kind of screening. The three major cancers — breast, cervical and oral, are largely amenable to high rates of cure with early detection, with at least 80% of the cases being completely curable if caught early,” said Dr Kataki.

Added to this is the lack of a standard treatment protocol that is strictly followed across all cancer centres. “Our studies have shown that many patients across the country do not get the standard concomitant chemoradiotherapy, so we need to educate our doctors better about the treatment protocols best recommended for patients,” he explained.

Although misdiagnosis is not commonly occurring, Dr Mohan Reddy, a paediatric haemato-oncologist from Bengaluru explained that in the case of blood cancers, there could be two reasons affecting early cancer detection. 

“Inadequate standard diagnostic material, especially to conduct a bone marrow test, could lead to a doctor missing a diagnosis due to there being no definitive signs of cancer. Doctors might believe a high white blood cell count could be due to an infection because the test wouldn’t show them any signs of malignancy,” he said. 

Additionally, steroid usage for a different disorder or as symptomatic treatment could also hamper blood cancer detection. “This could also lead to a misdiagnosis, prompting a high-intensity chemotherapy regimen as opposed to a low-intensity regimen if the cancer was detected earlier,” he explained.

Another cause of delayed access to life-saving treatment is the reliance on alternative medicine, noted Dr Shamsundar. “Many families, deterred by the costs, choose to follow nati medicine or other alternative medical practices which are not scientifically proven to be cancer-treating, either halfway or even before starting conventional treatments. They then arrive at the hospital where the cancers would have progressed to final stages, where there is little we can do. Some such medications are also harmful, leading to liver complications,” he explained.

Senior oncologists also point to the lack of trained healthcare personnel and oncologists for screening and treatment, expensive treatments due to imported machines and advanced treatments required, and infrastructure disparity between urban and rural areas as other major factors hindering survival rates. 

However, many acknowledged that with the introduction of the Pradhan Mantri Jan Arogya Yojana (PM-JAY), which offers a cashless cover up to Rs 5 lakh per family annually for treatments, more patients are starting and completing their treatment regimen due to lesser out-of-pocket expenditure.

Recommendations 

In Karnataka, Kidwai remains the most sought-after government cancer care institute, with one Peripheral Cancer Centre in Kalaburagi. Specialists from the hospital, however, emphasise that the government setup is simply inadequate to deal with the burden of cases it sees on the regular, and push for decentralised care with more centres, such as the one coming up in Mysuru.

With this, the number of trained personnel should also increase through more seats offering postgraduate diplomas and Master’s courses in oncology nursing and radiology, especially in central and northeastern parts of the country, said Dr Kataki. Along with improved awareness through dedicated IEC material, regular screenings must be conducted as in the West, especially for vulnerable groups and people aged 30 years and above.

In his opinion, cancer should be made a notifiable disease as soon as possible and import duties for anti-cancer drugs should be reduced as much as possible. In the 2024-25 Union Budget, Finance Minister Nirmala Sitharaman announced that the import duties would be waived for Trastuzumab Deruxtecan (for breast cancer), Osimertinib (lung cancer) and Durvalumab (lung cancer and biliary tract cancer). Cancer is notifiable in several states, including Karnataka, which passed an order to this effect in 2015, but it is not a notifiable disease at the Centre. 

“Whenever families come to the hospital for a different procedure, even once a year, there should be a policy to conduct opportunistic screenings for people,” Dr Kataki said.

A ‘capex light, operational heavy’ approach is a way forward to bridge gaps, said Dr Vishal Rao U S, group director for head and neck surgical oncology and robotic surgery at HCG Cancer Treatment Centre, Bengaluru. He emphasised the need to set up a drug discovery ecosystem in India, to take the lead in terms of discoveries. “We need to set up a structure to assess the ground-level realities in India, to collate supportive services including psychological counselling, better utilise mass media and mobile health opportunities, and improve palliative care,” he said.

A pan-India Lancet study, published in January this year, explored access to timely cancer treatment initiation in India, noting that the mean time to treatment initiation was 53.7 days from diagnosis to the beginning of treatment. It called for decentralising healthcare and integrating cancer care into primary health care, particularly at the Health and Wellness Centres established under the Ayushman Bharat initiative, aiding in routine screenings and early detection.

The revision of standard treatment guidelines based on Indian conditions and with inputs from all the major regional cancer centres in the country is underway and will be released shortly, noted Dr Nair. 

The central government should encourage NGOs to take up screening and vaccination drives, “like the Rotary was roped in for the oral polio vaccine programme,” said Dr Raghunadharao, besides increasing insurance coverage for all.

“We need to employ bioinformatics to study what molecular drivers, genetic markers, and population differences exist in cancer incidence in our country. Screening and treatment are expensive because we import so much. We should spend funds in this direction, towards improving personalised therapy based on one’s genetic makeup. We need the political will to fund indigenous innovation that will bring costs down,” he added.

(*Name changed on request)