Childhood cancer in Northeast: A steady increase in number of patients overshadows the stories of survival

Three years back doctors diagnosed Asha (name changed) with Ewing sarcoma, when the child was only 14 days old. Doctors of Departments of Paediatric Surgery and Cardiac Surgery of Guwahati Medical College Hospitals immediately operated on the new-born. They also referred the baby to Dr. B Barooah Cancer Institute for further investigation and treatment where the baby received chemotherapy.

By that time, the baby was only four weeks old. Keeping hopes alive to parents, doctors and caregivers Asha is still surviving fighting against all odds, even during uncertain years of Pandemic.

While Asha’s story is inspiring, many such children diagnosed with different types of childhood cancer, was not fortunate.

According to a retrospective study conducted between July 2020 to June 2021 by Dr. B Borooah Cancer Institute (BBCI), Guwahati, out of 701 childhood cancer patients suffering from several types of childhood cancer who were tested for SARS-CoV2, during that period, 52 children detected positive. Nine children out of these 52 children experienced severe covid 19 symptoms. Eight of these children with severe covid-19 symptoms could not survive, the study states.

The rate of COVID-19 positivity among childhood cancer patients was approximately 7 per cent, according to the study.

“The rate of death among COVID-19 positive patients was 15.0 per cent. However, in case of COVID-19 negative patients diagnosed with childhood cancer, we observed only one death during the study period. All these patients were severely immunocompromised with bacterial and fungal coinfection, which lead to increased rate of mortality”, says Moonlima Hajarika, Professor and Paediatric Oncologist of the institute, who headed the study.

The study also revealed that out of eight children who expired, four died in first three months of study period. Among these COVID-19 positive children, the median age was six years. Among them, 30 (57.6 %) were suffering from haematological malignancy and 22 (42.4%) had solid malignancy. In COVID-19 positive group, among the haematological malignancies; acute lymphoblastic leukaemia (ALL) ( a type of blood cancer) comprised 70 per cent (21), acute myeloid leukaemia (AML) comprised 16.66 per cent (5) and lymphoma accounted for 13.33 per cent.

There is a steady increase in number of patients diagnosed with childhood cancer. Hazarika says, the Paediatric Oncology Services in Dr. B Barooah Cancer Institute registered 523 new patients of childhood cancer in 2022. Of these, number of patients suffering from Acute lymphoblastic leukaemia were the highest- 84. Of these, 465 are alive, 58 are dead, 80 lost to follow up, and 44 refused or abandoned treatment.

The institute receives patients from states in Northeast India and neighbouring countries.

In 2013, number of patients registered and diagnosed with cancer was only 95. There is sharp increase of registered patients diagnosed with childhood cancer. The number was 146 in 2014, 183 in 2015, 85 in 2016, 230 in 2017, 297 in 2018, 457 in 2019, 350 in 2020, and 491 in 2021.

“We have a number of babies suffering from different types of Cancer below three or four months. Number of children diagnosed with diverse types of cancer has been increasing each year. The low rate of registration during 2020 may be attributed to pandemic situation with severely restricted movement of people’, says Hajarika.

Pandemic also attributes to higher rate of abandonment of treatment, she adds. The rate of abandonment of treatment came down to 2.18 per cent in 2019 from 14.04 per cent in 2013. However, it increased to 5.26 per cent in 2020, 6.50 per cent in 2021 and 8.14 per cent in 2022.

Similarly, pandemic situation has also a tremendous impact on reducing survival rate of percentage. Due to continuous efforts, survival rate reached at 73.30 per cent during 2019, in comparison to 36.25 per cent during 2013. It came down to 68.32 per cent during 2020 and 62 per cent during 2021.

However, in 2022, the graph of survival rate touched at 88 per cent, which is highly inspiring, she adds.

Continuous efforts and scientific intervention to cure paediatric cancer have also noticed in year-wise rate of death of patients suffering from childhood cancer. The rate of death was 49.37 in 2013, 59.62 in 2014, 41.25 in 2015, 38.23 in 2016, 35.47 in 2017, 31.15 in 2018, and 22.97 in 2019. In 2020, the Pandemic year, the rate to death recorded 25.87. It again came down to 12 in 2021 and 11 in 2022.

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A situational analysis of Childhood Cancer Services in India, Policy Brief, published in February 2023, by Indian Council of Medical Research – National Centre for Disease Informatics and Research, Bengaluru, India states that “four per cent of all cancers in India are among children aged 0-14 years, and these are physically and cognitively debilitating condition”.

The Policy Brief identifies following areas as significant barriers in the diagnosis and treatment of childhood cancers as reported by state nodal officers and civil society organizations and NGOs

• Lack of awareness among parents and caregivers regarding early signs and symptoms.
• Lack of expertise among grass-root level workers in diagnosis and poor accessibility to diagnostic centres due to geographical conditions.
• Shortage of childhood cancer diagnostic and treating health facilities
• Lack of referral pathways
• Treatment denial (non-acceptance or refusal to undergo treatment) and treatment abandonment (failure to complete treatment when the disease can be effectively controlled), for which financial constraints were the most commonly cited reason. The Policy Brief also calls for a number actions that include (1) formulating a childhood cancer policy to enable timely diagnosis, treatment, supportive care, and follow-up through well-defined care pathways,(2) integration of childhood cancer as a part of the national cancer control response, (3) financing mechanism and schemes for childhood cancer treatment, (4) training of general physicians and primary care providers to identify signs and symptoms in children with cancer, which will enable timely referral; (5) expansion of paediatric oncology units, training of physicians and paramedics in paediatric oncology; (6) creating large-scale awareness of childhood cancer for its timely diagnosis, completing treatment, optimal cure rate and healthy survivorship.

link of earlier story:

https://www.nezine.com/info/RW0xYm5mRnNwS2dOZGE4RGgwRC9xdz09/childhood-cancer-care-in-northeast-india:-rise-in-survival-rate-is-credited-to-awareness-and-free-treatment-for-needy.html

Ratna Bharali Talukdar