Help us Strengthen Drug Safety in Childhood Cancer Care.

Access to Care

Chairs

Shruti Kakkar

Professor

CMC, Ludhiana

Haresh Gupta

Deputy COE

Cankids Kidscan

Goal Statement

To improve access to quality, affordable and evidence-based childhood cancer care in India through strengthening early recognition, referral and care pathways; improving availability and safety of medicines and diagnostics; generating evidence on treatment costs and financial protection; strengthening pediatric oncology services; and supporting evidence-informed policy and planning.

Key Focus Areas

  • Development of Early Recognition Manual and Implementation Study.
  • Keep the mapping of Centre’s and resources updated, with the list of hospitals available in the public domain on the ICCI website.
  • Medicines Safety Monitoring for Pediatric Oncology by capturing information on adverse drug reaction.
  • Estimate the cost of childhood cancer treatment in India through a multi-Centre costing exercise.
  • Improving the visibility of childhood cancer clinical trials in India.
  • Defining guidelines for pediatric cancer Centre’s and shared care standards.

Glimpses of Work

Context

Early diagnosis is key to improving survival rates for childhood cancer in India. Many cases are diagnosed late due to non-specific symptoms, low awareness among families and primary care providers, limited training at the primary healthcare level, weak referral pathways, limited diagnostic infrastructure, financial constraints and insurance gaps, reliance on traditional healers, and stigma and fear. In the InPOG ACCESS India study (InPOG-ACC-16-02), the diagnosis interval (median 37 days, IQR 14–85) was the largest contributor to the time from first symptom to start of treatment (median 57 days, IQR 27–113). The Early Recognition Manual and Implementation Study aims to strengthen early identification through capacity building, resource development, and evidence generation.

Purpose

To develop standardized recognition and referral guidelines and create a training model for healthcare workers across districts.

What We Have Done
  • In April 2025, ICCI conducted a two-day national workshop with stakeholders from WHO, government, public health institutions, NHSRC, paediatric oncologists, and civil society. Post-workshop, feedback was incorporated into the manual.
  • An India-specific Early Recognition Manual for childhood cancer, targeted at Medical Officers at PHC and CHC levels, was developed, using the PAHO early recognition document as the base reference. Members of the Access to Care Task Force were invited to contribute and 20 experts joined the working group. Each sign/symptom was assigned to two clinicians, who developed a brief explanation and a clinical algorithm for early recognition and referral.
  • First round of User feasibility pilot training conducted at the CHC (old DHH) in Bargarh District, Odisha on September 6, 2025.
  • Training involved 53 participants including CDMO, CHC Superintendents, PHC and CHC Medical Officers, and paediatricians.
  • Organized in collaboration with multiple NGOs and trusts (Fighters Group, Bargarh Cares, Umeedein Odisha, CANKIDS, UISCF, Dhanwantari Trust, Lions Club Lotus, Rotary Club Smile, Mahimas, and Sanyog).
  • Training delivered by paediatric oncology experts from SUM Hospital, KIMS, AIIMS Bhubaneswar, and others.
  • Second pilot: on 2nd May 2026, a training session for MBBS students was conducted at CMC Ludhiana to assess the user feasibility of the algorithm- and case study-based Early Recognition Manual.
  • Peer Review has been completed and a poster was presented at SIOP 2026 in San Antonio.
Next Steps
  • Finalize Early Recognition and Referral Pathway document.
  • Develop operational guidelines for training and dissemination.

Context

A critical barrier to improving childhood cancer outcomes in India is the absence of a comprehensive and up-to-date mapping of centers treating children with cancer. A global mapping exercise was initiated by PAHO, IAP, SIOP & Resonance to document and visualize the existing infrastructure, services, and workforce capacity. This mapping enables better planning, referral linkages, and network strengthening across states.

Purpose

To collate and analyze data from treatment centers across India to create a national database and facilitate evidence-based planning for service delivery.

What We Have Done
  • Mapped Centres are displayed under Access services .( add link to hospital site here)
  • Data received from 128 centers and analysis of 108 centers completed; to date, 151 centers have been mapped and the list of hospitals is hosted on the ICCI website.
Next Steps

Continue and complete national mapping exercise.

Context

India lacks a systematic mapping of national and state Essential Medicines Lists (EMLs) against global recommendations for childhood cancer medicines.

Purpose

India lacks a systematic mapping of national and state Essential Medicines Lists (EMLs) against global recommendations for childhood cancer medicines.

What We Have Done
  • Compiled the national and state Essential Medicines Lists relevant to childhood cancers.
  • Completed the analysis of the lists.
  • Presented a poster at the St. Jude convening in Memphis in December 2024.
  • Submitted a manuscript for publication.

Context

Substandard and falsified oncology drugs cause treatment failure and higher mortality, and there is no dedicated pharmacovigilance structure for paediatric oncology.

What We Have Done
  • Conducting secondary research to analyse drug safety alerts related to childhood cancer medicines issued by CDSCO (2021–2025) and PvPI (2016–2025). An abstract was presented at PHOCON 2025.
  • Collecting data on adverse drug reactions and drug quality issues from the paediatric oncology community to identify patterns and gaps in medicine safety.
Outcome/Impact
  • 16 biweekly reports have been published, with 10 reports received from the community.

What We Have Done
  • The first educational webinar, on the Blinatumomab Humanitarian Access Program, was held in collaboration with PHO-IAP, with Dr. Caitlyn Duffy as the speaker.

Context

Every country budgets its health expenditure, with the focus largely on noncommunicable diseases such as cancer and cardiovascular diseases. Very few nations budget specifically for childhood cancer, and governments do not budget the cost estimation. National disease control plans usually occur every five years.

What We Have Done
  • A core team was formed, centers were identified, and data collection was completed from 24 centers.
  • Analysis is currently in process.
  • Presented at SIOP 2026 in San Antonia.

Purpose

To systematically identify and prioritise research questions of highest relevance to India in childhood cancer by engaging patients, families, survivors, clinicians, researchers, and civil society, thereby guiding future research investments, collaborations, and policy-relevant studies.

What We Have Done
  • The Top 10 research priorities for childhood cancer in India were finalised during the Round 3 in-person consensus meeting held in Manipal during PHOCON.
  • The manuscript has been completed.
  • Abstract presented at SIOP 2026.
Next Steps
  • Focus on scientific dissemination and national-level communication.

Purpose

To create a centralised, easily accessible resource of ongoing childhood cancer clinical trials, facilitating clinician awareness, patient referrals, and multicenter collaboration.

What We Have Done
  • Execution phase completed : a Phase 1 database of ongoing paediatric cancer clinical trials was systematically reviewed, compiled, and categorised by disease, intervention type, and institution (completed September and October 2025).
  • Dissemination phase : the database was shared via the ICCI and InPOG platforms for wider use by clinicians, families, and stakeholders.

  • Define guidelines for paediatric cancer centres and shared care networks.
  • Set paediatric oncology service standards.
  • Update curriculum to include early diagnosis and referral training.
  • Utilize existing NT-PPO for training of Pediatricians for early recognition of childhood cancer.
  • Assess and analyse the financial benefits available to children with cancer under PM-JAY.
  • Conduct random testing for drug quality.
Photos
  • CMC Ludhiana training.
  • Three Tier proposed structure.
  • SIOP Abstract Dr.Shruti’s Picture.
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