The eighth edition of PHOSSCON 2024 (Pediatric Hematology Oncology Support Services Conference) recently concluded in Jammu, marking a significant milestone in the landscape of pediatric oncology and haematology care. Organized by CanKids in collaboration with the PHO-IAP (Pediatric Hematology Oncology chapter of the Indian Academy of Pediatrics), this pivotal event ran parallel to the 27th PHOCON (Pediatric Hematology Oncology Conference). The organizing committee, which included CanKids KidsCan, Jiv Daya Foundation, Relief from Cancer, Leukemia Crusaders, Hope Foundation, Umeedein, ICS Ugam, St. Jude Child Care Centre, Sangwari, and DigiSwasthya, in conjunction with the PHO executive and the Local Organizing Committee, worked tirelessly to ensure the success of this collaborative endeavour.
A Milestone for CanKids
PHOSSCON 2024 was a particularly momentous event for CanKids. During the inauguration of the parallelly running 27th PHOCON, Poonam Bagai, founder and chairperson of CanKids, was honoured with the prestigious Lifetime Achievement Award. This distinguished recognition acknowledges her exceptional contributions to the field of childhood cancer care and advocacy. It further accelerates CanKids’ mission to help children with cancer not only survive but thrive.
Collaboration and Shared Expertise
PHOSSCON 2024 saw a remarkable turnout of 100 participants representing 39 organizations focused on pediatric cancer and hematological disorders such as sickle cell anemia and thalassemia. The event brought together healthcare professionals, NGOs, patient advocates, social workers, and various stakeholders to exchange best practices and address critical challenges in areas such as patient-centric care, financial protection, survivorship, supportive care, and bone marrow transplant accessibility.
The organizing committee in attendance included St. Jude Child Care Centre, Sangwari, DigiSwasthya, Umeedein, and Aarambh Palliative Care. These organizations contributed to an enriching platform for collaboration, capacity building, and advocacy for children with cancer and hematological disorders.
Spotlighting Initiatives
The first session of PHOSSCON 2024 provided NGOs with a valuable platform to showcase their initiatives, research, and efforts aimed at improving outcomes in pediatric oncology and hematology care.
- St. Jude Child Care Centre: Payal Tyagi presented their patient-centric initiatives for children with cancer and their families, focusing on their training programs designed to support other Home Away from Home (HAH) facilities across India.
- Sangwari-People’s Association for Equity & Health: Dr. Baidyanath Debnath emphasized Sangwari’s model aimed at enhancing care for sickle cell patients in Chhattisgarh. The organization’s commitment to equity and better health for underserved populations stands as a prime example of community-centered healthcare.
- CanKids: Dr. Haresh Gupta discussed the NGO’s comprehensive and equitable support services for children with cancer and their families, which span across the country, providing much-needed resources for the battle against pediatric cancer.
These presentations highlighted the power of collaboration in scaling up patient-centric care models and extending their reach to marginalized and underserved communities.
Addressing Gaps in Healthcare
PHOSSCON also highlighted significant gaps in healthcare services, awareness, and support systems, particularly in economically disadvantaged and rural areas. Key takeaways from the discussions included the necessity for:
- A multidisciplinary, holistic care model that integrates psychological, nutritional, and social support alongside medical treatment.
Innovative solutions such as telemedicine, task-shifting, and expanding the roles of allied health professionals to ease the burden on overburdened healthcare centers.
Focus on Compliance and Fundraising
Another crucial aspect of PHOSSCON 2024 was compliance with Corporate Social Responsibility (CSR), the Foreign Contribution Regulation Act (FCRA), and tax regulations. Sessions delved into key topics such as compliance reviews, staff training, employee welfare, donor communication, and diversified fundraising strategies.Special focus was given to fundraising, with discussions on tailored approaches such as tech-driven campaigns and corporate partnerships to address the funding challenges faced by NGOs.
Highlights from the Fundraising Competition included:
- DigiSwasthya’s mobile medical units, won the Best Campaign of the Year for their groundbreaking approach to improving healthcare access.
- CanKids’ Cycle for Gold campaign, recognized for Best Individual Giving of the Year, celebrated for its impact on pediatric cancer care.
Building Treatment Capacity
During the formal inauguration, Poonam Bagai and Dr Sanjeev Kumar Digra spoke on the critical importance of capacity building, the expansion of treatment infrastructure, and raising awareness about pediatric oncology and hematology. Key issues raised included the scarcity of hematologists in certain regions, limited access to specialized care, and the pressing need for specialized training and fellowship programs for medical professionals.
Key Discussions: Patient and Family Support
The conference also delved into how to integrate nutrition, psychosocial support, and infection control into treatment protocols to enhance outcomes. The financial strain of cancer treatment on families was another pressing issue discussed, with consensus on the need for:
- Expanded financial support systems to reduce out-of-pocket expenses.
- Increased access to government schemes and insurance coverage to mitigate treatment inequities.
Advocacy for Better Outcomes
Advocacy remained a central theme throughout PHOSSCON 2024. The Indian Childhood Cancer Initiative (ICCI), led by Poonam Bagai, was highlighted as a significant step forward in uniting stakeholders—including NGOs, donors, corporates, and policymakers—to achieve India’s ambitious goals of 60% cure rates, 100% access to treatment, and improved psychosocial care for children with cancer.
Speakers emphasized that a unified approach, blending advocacy, education, and survivorship support, is key to reaching these targets.
Bone Marrow Transplants and Survivorship
Bone marrow transplants are essential for certain pediatric cancers, but only 5-10% of patients in India find a suitable donor match. Discussions underscored the need for:
- Increased donor recruitment and public awareness to meet the growing demand for transplants.
In conversations on survivorship and palliative care, participants agreed that early integration of palliative care and survivor empowerment is vital for ensuring comprehensive support for children recovering from cancer.
A Brighter Future Through Collaboration
PHOSSCON 2024 highlighted the power of collaboration in advancing the care and treatment of children with cancer and hematological disorders. With active participation from NGOs, healthcare professionals, and advocates, the conference demonstrated that shared efforts and innovative approaches are essential for creating a brighter, healthier future for children battling these life-threatening conditions. The discussions reaffirmed that collaboration is the key to improving patient-centric care, and with continued advocacy and innovation, the future for children with cancer looks promising.