Evolution of ICCI

A stakeholder meeting was organized on June 24, 2019 in New Delhi to discuss the WHO Global Initiative for Childhood Cancer (GICC), and the potential opportunities to align and accelerate progress for children and adolescents with cancer through efforts in India. Representation was from the pediatric oncology community - Pediatric Hematology Oncology (PHO) Chapter of Indian Academy of Pediatrics (IAP) and Indian Pediatric Oncology Group (InPOG) as well as civil society and patient groups (Cankids Kidscan). Also present were Dr Carlos Rodriguez Galindo, Dr Catherine Lam and Dr Scott Howard representing St Jude Global and the International Society of Pediatric Oncology (SIOP) which are working closely with the WHO GICC in other parts of the world. Attendees were made aware of the goals of the WHO Global initiative and how this could intersect with the existing efforts of PHO IAP and InPOG. Brainstorming led to identification of focus areas listed below to be addressed by taskforces:

  • Data and Registry.
  • Access to care networks & referral pathways, standards for centres, reducing missed diagnosis, timely diagnosis and treatment.
  • Workforce, accreditation, training for health professionals and social support teams.
  • Protocols and clinical trials.
  • Drugs & Diagnostics - affordability, availability and quality.
  • Supportive Care - social support, infection control & hygiene, nutrition, accommodation, blood support, abandonment prevention.
  • Financing, Policy, Stakeholder Engagement.
  • Patient, family and community information, awareness and engagement - participatory approach.
  • Continuum of Care including palliative care, survivorship care and reintegration.
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Stakeholders at the meeting on June 24, 2019 in New Delhi

The above proposed taskforces were further refined through ongoing dialogue via email. A follow-on meeting coincided with the annual congress of PHO IAP (PHOCON), as well as that of parent organisations (PHOSSCON), held in the city of Varanasi from 6th-8th Sep 2019. Two workshops were held with PHOCON invited faculty and PHOSSCON delegates to sensitize and create awareness of the WHO GICC for a larger and more diverse national audience. In addition, the participants were divided into small groups based on their expertise for each of the proposed taskforces and asked to discuss and come up with a list of problems related to each taskforce, the stakeholders who would solve those problems, and what potential solutions might be.

World Health Assembly
Two workshops held to sensitize and create awareness on WHO GICC in September 2019.

A meeting was held with WHO Childhood Cancer representative, Dr Andre Ilbawi, at Lyon, France during the 51st SIOP Congress on October 23, 2019. This was to pursue a formal endorsement and a member call out to the Indian Government Ministry of Health and Family Welfare, by WHO and through WHO SEARO and WHO India, for childhood cancer to be a child and health priority in India and at for inclusion in the National Programme for Prevention and Control of Cancer, Diabetes, Cardio- vascular Diseases and Stroke (NPCDCS) plans and programs of the Indian Government.

World Health Assembly
WHO Childhood Cancer representative, Dr Andre Ilbawi with representatives from India at SIOP Annual Congress in Lyon.