Medicosnext
Dr. Shilpa Amatya
She is a Consultant Paediatric Hemato-Oncologist at KIOCH. She completed her MBBS from Manipal College of Medical Sciences, Pokhara, Nepal, followed by an MD in Paediatrics (2017–2020) and a DM in Paediatric Haematology-Oncology (2021–2024) from PGIMER, Chandigarh, India. Dr Amatya has special interest in the management of childhood cancers and complex blood disorders, including aplastic anemia and thalassemia major. She finds her greatest motivation in the resilience, grit, and positive spirit of children battling life-threatening illnesses, which continually inspires her to work towards achieving cures and improving the quality of life of her young patients.
The Takeaway Message
Challenges make us stronger, builds resilience and paves the seed of growth when we choose to learn from them, persevere and never give up. Childhood cancer care is one such domain of hope, strength, courage and resilience.
When it comes to treating a child with cancer in a limited resource LMIC setting like here in our country Nepal, there are tremendous multifaceted challenges faced by the patients, their families as well as the healthcare providers. It is crucial to understand and address these in-depth intricacies and challenges such as lack of education/awareness, late diagnosis/advanced disease at presentation, poor diagnostic facilities, limited access to quality care, poor supportive care, lack of trained healthcare personnels, financial and socio-cultural barriers to care, lack of national childhood cancer registry, inconsistent data collection and difficult/inconsistent access to some common cancer medications. These all contribute to the huge gaps in childhood cancer survival outcomes between developed nations and LMICs.
However, inspiring initiatives like the Global Platform for Access to Childhood Cancer Medicines (GPACCM) which aims to bridge the gap in access to essential cancer medicines provide us with hope and positivity.
We also need to realize that cancer care requires a multi-disciplinary approach with the combined, coordinated and cooperative effort of various healthcare professionals (doctors, nurses, dietician, etc.), social support staff, family support officers and collaborative efforts of various organizations working for children with cancer. Every little effort of every single individual matters in improving outcomes and helping little children in their fight against cancer.
We at Kathmandu Institute of Child Health (KIOCH) will strive to reach out and make a meaningful difference in our communities, one child at a time.“Every small step and effort in the right direction matters”.
Childhood cancer is a journey of courage, hope and resilience. As per WHO data, around 4 lakh children worldwide develop cancer each year. The most common pediatric cancers include leukemias followed by brain tumors, lymphomas (Non-Hodgkin’s and Hodgkin’s lymphoma) and solid tumors such as Wilm’s tumor, Neuroblastoma. Other childhood tumors include Rhabdomyosarcoma, Retinoblastoma, Bone tumors (Ewings Sarcoma and Osteosarcoma), Germ cell tumor, Hepatoblastoma, etc.
There is a huge gap in childhood cancer survival outcomes between developed nations and low- and-middle-income countries (LMICs). Addressing these gaps in childhood cancer care is a major challenge and a dire necessity in today’s world. Lack of education and awareness, late diagnosis and advanced disease at presentation, poor diagnostic facilities, limited access to quality care, shortage of trained personnel, poor supportive care, inconsistent access to chemotherapy medications, financial barriers, inconsistent data collection and lack of national childhood cancer registry, geographical and transportation difficulties, socio-cultural barriers are some of the challenges encountered in childhood cancer care in a LMIC context here in Nepal.
Some common grass-root challenges that we face while treating childhood cancers is the difficult/inconsistent access to some common cancer medications. For example, 6-mercaptopurine (6-MP), an antimetabolite oral chemotherapeutic medicine which is widely used in the treatment of childhood Acute Lymphoblastic Leukemia (ALL) is not easily available in our country probably as it is not yet DDA registered here and has to be frequently procured through OTP (One Time Permission). Likewise, capsule ATRA (All-Trans Retinoic Acid) which is crucial for the treatment of Acute Promyelocytic Leukemia (APML), a distinct aggressive yet highly curable subtype of AML which usually presents as a medico-oncological emergency with severe bleeding manifestation/disseminated intravascular coagulation (DIC). This life-saving essential chemotherapeutic medicine is also not currently DDA registered in our country leading to difficulty/delay in procurement through OTP. Another challenging example is the lack of availability of Rasburicase, which is a recombinant urate oxidase enzyme that metabolizes uric acid to soluble allantoin. This medication is used to treat high uric acid levels (hyperuricemia) which is seen as a part of tumor lysis syndrome in some common childhood malignancies (with bulky disease and rapid cell turnover) like ALL with hyperleukocytosis and bulky disease and Burkitt Lymphoma. Rasburicase can cause rapid reduction in uric acid levels and can significantly reduce the need for dialysis in various settings. However, even Rasburicase is not currently DDA registered in our country and has to be procured through one time permission (OTP) leading to significant delays and difficulty accessing these life-saving medications at the right time when it is urgently required. These are just a few realistic examples of some life-saving essential medicines which should receive DDA registration sooner so that it would ultimately result in better, improved, consistent accessibility in times of need thereby facilitating the treatment process of childhood cancers. We also need to constantly learn and upgrade our healthcare services challenging ourselves to do better with a positive broad outlook and should ask ourselves this question – how can we do things better ? How can we improve upon pre-established norms and services so as to advance and improve childhood cancer care in our country.
There are noble initiatives like the Global Platform for Access to Childhood Cancer Medicines (GPACCM) which aims to bridge the gap in access to essential cancer medicines thereby improving survival rates of childhood cancer in LMICs by 60% by 2030 – this provides us with hope and a firm belief that every child irrespective of where they live deserves access to proper treatment and care.
Cancer care requires teamwork of doctors, nurses, dietician, social-support staff,various support groups and organisations working together for children with cancer along with the need for good robust supportive care, psycho-social support, maintaining data registries, strengthening diagnostic services, multidisciplinary collaborative efforts along with the absolute need for consistent access to essential childhood cancer medicines.
As a pediatric hemato-oncologist, I am hopeful and optimistic that as our team at Kathmandu Institute of Child Health (KIOCH) grows stronger with a passion to serve and improve child healthcare in our country, we would be able to make a meaningful difference and a positive impact in our communities one child at a time. “Together we can, we will and we must put in our best possible efforts in delivering the best possible healthcare services for the children of our country.”
