CanKids was a high profile participant in the prestigious Tata Mumbai Marathon (TMM) 2025 which happened on 19 January 2025. TMM, now in its 15th year, was far more than a run of the mill marathon. The event gave CanKids the opportunity to raise awareness and funds for children battling cancer, highlighting the resilience and strength of young cancer survivors. In 2025, over 67 individuals represented CanKids in the marathon. In their ranks were 10 childhood cancer survivors from different parts of India who participated in the Dream Run category. The runners also included supporters, caregivers and a team from Servier India.
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 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 InitiativesThe 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.
Addressing Gaps in HealthcarePHOSSCON 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:
Focus on Compliance and FundraisingAnother 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:
Building Treatment CapacityDuring 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 SupportThe 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:
Advocacy for Better OutcomesAdvocacy 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 SurvivorshipBone 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:
A Brighter Future Through CollaborationPHOSSCON 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.
WHO envisages UHC as a global scenario where “all people have access to the full range of quality health services they need, when and where they need them without financial hardship.” It covers the full continuum of essential health services, from health promotion to prevention, treatment, rehabilitation, and palliative care across the life course. WHO has set a global target of 100 per cent UHC by 2030. India is still short of that target. Poor, distressed families of children with cancer sell off their land, and jewelry, and wipe out their savings to meet catastrophic out-of-pocket health expenditures (OOPE). They shell out exorbitant sums for medicines, diagnostics like MRIs, CT scans, and blood tests, surgery, follow-up consultations, besides cycles of chemotherapy, radiotherapy, and the like. There are other costs like transport, accommodation, and food. Families also have to contend with a loss of income, educational support, and home modifications. All this includes hidden costs like counselling and therapy, nutrition, palliative care, child care for siblings, and legal and administrative support. Such a huge financial drain leads many families to abandon treatment.
Today, CanKids partners with hospitals, medical professionals, and state governments to enable access to the best treatment, care, and support. Its reach extends to 141 CanKids Hospital Support Units (CHSUs) spread across 58 cities and 22 states. Each hospital has a holistic CanKids social support team of social workers, teachers, psychologists, nutritionists, patient navigators, parent support group members, nurses, and cancer survivors. CanKids also has MOUs as knowledge and technical partners with 8 state governments and 16 state projects to improve Access2 Care.
It was also not an unusual sight to see them by the roadside, patiently awaiting transport or soothing families and children with cancer. “I salute you Poonamji and the Cankids team for all the work you have done,” said Dr Paul.
Dr Paul described UHG’s twin pillars as access and access to health care without financial hardship. The last decade, he pointed out, had seen the country making enormous strides on both fronts. Life expectancy has risen since Independence because of overall development, access to health services, disease control, and so on. Out-of-pocket expenditure on health services—curbing which is a key step for moving towards UHC—has consistently declined. In proportion to the total health expenditure, in 2013-14, OOPE was a whopping 63 per cent with the rest supplemented by government spending. That figure improved to 47.1 per cent in 2019-20. The next year it was down to 41-42 percent. There is a sharp decline in OOPE to 37 per cent in 2021-22. Now the government is set on a further reduction of OOPE to 10 percent. But is India going to achieve that magical figure and achieve the WHO target of 100 per cent UHC by 2030? Dr Paul is optimistic. In the space of tertiary care, there has been a multiplication in the number of AIIMS. Medical colleges and doctors have increased. While the setting up of infrastructure appears favourable, there continues to be a need for doctors, nurses, oncologists, and paediatricians. More cancer beds are needed. Ayushman Bharat is the flagship programme of the Indian government to achieve the vision of UHC. Ayushman Bharat has two components—health and wellness centres and Pradhan Mantri Jan Arogya Yojana (PM-JAY). Ayushman Bharat PM-JAY, the largest health assurance scheme in the world, aims at providing a health cover of Rs. 5 lakhs per family per year for secondary and tertiary care hospitalization to over 12 crores of poor and vulnerable families (approximately 55 cr beneficiaries) that form the bottom per cent of the Indian population. The cashless service encompasses around 1,929 procedures covering all treatment costs such as drugs, supplies, diagnostic services, physician's fees, room charges, surgeon charges, OT and ICU charges etc. Cancer coverage through PM-JAY reduces OOPE for cancer patients. Though the government scheme is meant to serve only hospitalisations, it makes daycare for cancer an exception. “The coverage does include cancer but I appreciate that we are not perfect for every type of cancer and what is required for covering expenses related to cancer therapy,” acknowledged Dr Paul. Dr Paul had out-of-the-box suggestions for cancer management. He pointed out that cancer doesn’t need to be treated solely by oncologists. A surgery department in a medical college should be equipped to deal with a significant proportion of common cancers, including those of children. An immediate game changer would be to, in his words, “demystify at least part of cancer therapy” to reduce the burden on superspecialists. He visualised a scenario where after the initial diagnosis, chemotherapy could be provided closer to home in district hospitals or nursing homes covered through PM-JAY. Radiation could be planned by radiation oncologists but implemented by a different team. A strengthened primary health centre should be able to tackle minor complications that may arise after cancer therapy. Telemedicine too should be explored to improve detection, the reach and the continuum of health care for cancer. Regarding financial protection for cancer treatment, Dr Paul pointed out that indirect costs can be very high. He said that in distant states like Mizoram and Meghalaya where infrastructure for cancer treatment lags, patients have to be sent by treating teams to other states. “How do we offset the OPPE of the family on transportation? How do we offset the transportation even from one district to the other?” he questioned. He referred also to Niti Aayog’s finding of the “missing middle” segment of the population. They are defined as people who are not covered by a government insurance scheme because they are not poor enough to be beneficiaries, at the same time they are not wealthy enough to purchase private insurance schemes. A family of four with a monthly income of Rs 20,000 cannot afford to pay a premium ranging from Rs 25,000 to Rs 50,000. It is this large segment of the population who also needs financial protection, particularly for catastrophic situations like cancer. Ultimately, Dr Paul stressed the need to make primary health care a priority. He called on all key stakeholders to help in this endeavour.
All she wants now is to make Akarsh’s last days comfortable. She has had every possible support from the PPCC team at the centre. “They fulfilled Lalla’s every wish be it the food of his choice or his birthday celebrations,” said a grateful Reena.
He is happy to be home. But the deadly cancer has ravaged his little body. Some weeks ago he began to hallucinate. Dr Haresh Gupta Chief Programme Officer-Medical and head of PPCC and Pediatric Cancer Research Institute (PCRI), reassured his mother about symptoms. She also received counselling to tide her over her trauma as she watched her young son slip away.
She describes palliative care as a “philosophy of treatment” that needs to be integrated with pediatric oncology treatment. CanKids’s model of palliative care, she says, provides holistic support to a child with cancer and the family, regardless of whether the child recovers or succumbs to the illness. “We look at the physical, mental, emotional, and spiritual aspects as well. As doctors, we treat the pain but we also need to identify other symptoms and specific needs like lack of hope, anorexia, anxiety due to uncertain cure prognosis or financial stress. We look at managing these aspects, using both medical and non-medical measures,” she emphasizes. Subhita, India’s only stand-alone Pediatric Palliative Care Center in India was set up in 2012. The centre is a dream project of Poonam Bagai, a colon cancer survivor and founder chairman of CanKids KidsCan. She is also vice chairman of Pallium India, a Trivandrum-based NGO that aims at the alleviation of the health-related suffering of a large segment of the Indian population. PPCC is a 10-bed Nursing Home under the Delhi Government Nursing Act. It has in-patient, outpatient and daycare facilities. The centre also functions as a hospice. On any given day, PPCC’s ambulatory clinic gets children with cancer who pour in largely from AIIMs and other overstretched hospitals. The clinic is an OPD facility for children who need antibiotics, says Jubilee, head nurse at PPCC. It also functions as a daycare. The children get lunch between antibiotic doses. If any complications arise, the doctor is contacted and they may be admitted to daycare. A child is referred to the centre by treating doctors or CanKids social support teams at partner childhood cancer hospitals. Sometimes this could be even before diagnosis or treatment has begun. A child could also be there if symptoms flare up like fatigue, breathlessness, difficulty in swallowing, ulcer and loss of appetite. An important feature of the centre is psychological counselling for the child and the family throughout the cancer journey, including the end-of-life and bereavement stages. The backbone of CanKids PPCC is a holistic social support team. These include palliative care trained physicians, nurses, nursing aides, social workers, psychologists, a physiotherapist, a dietician, patient navigators and community health workers. Jubilee is the head nurse at the PPCC. She says that pain management is crucial for a child with cancer. To ease pain, analgesics like Paracetamol or Ibuprofen are dispensed. However, if the pain is severe, based on doctors’ prescription children are administered morphine. CanKids has a morphine licence from the DCGI. It is heart-rending when a child cries in excruciating pain, says Jubilee. The nurses have to be compassionate and caring particularly since most of the children at the centre are at the end-of-life stage. Clinical psychologist Hiba, a colon cancer survivor herself, can well understand the emotional pain of families. She is a reassuring presence as she makes a round of the ward. She does first-line counselling, pre-and post-surgery counselling as well as tides families through when a child is under treatment like chemotherapy, or radiation, has a relapse or passes on. “We hold the hand of patients and caregivers from beginning to end and even after the treatment. We fulfil every wish of a child, be it for toys or anything else,” she says. To enable a child to keep up with studies, there is a teacher. Vandana, who has been with CanKids for 19 years, keeps an eye on three young children seated around a small table. She gently encourages them to engage in colouring and counting. While at the center, families also get free meals, and an ambulance facility to shuttle them to and from the hospital. When families opt to return home, they are equipped with medication for one month, air mattresses, wheelchairs and crutches or any other mobility aid. Once home they can stay in touch with the PPCC team through the 24x7 helpline and return to the centre if needed. PPCC usually gets in patients from Bihar, Uttar Pradesh, West Bengal and Jharkhand. Families from Delhi by and large prefer to stay at home and use OPD facilities. The patients who come to the centre are by are by and large being treated at hospitals like AIIMS, Safdarjung Hospital, and Lok Nayak Jayprakash Hospital. Some come from private hospitals like Apollo Hospital, and Max Hospital. Most families are farmers or daily wagers. PPCC functions in Delhi, NCR. But it has wider aims. The idea is that the centre functions as a model for the integration of palliative care, pain and symptom management with pediatric oncology treatment across over 142 pan-India partner hospitals known as CanKids Hospital Support Units (CHSUs). With this objective in mind, CanKids conducts capacity-building workshops and conferences with nurses, doctors, pharmacists, surgeons, radiologists and other medical professionals engaged in pediatric oncology. The organization also collaborates with medical professionals, NGOs, and other key stakeholders to advocate for better policies for children with cancer, including the Right to Palliative Care. In the long term, CanKids seeks to sensitize grassroots health workers about the need for palliative care and create referral pathways so that a child with cancer from a centre can access palliative care specialists anywhere. Among the other ideas in the offing are virtual support and relapse management for patients who have returned home. Now PPCC is looking at relocation from Gautam Nagar to larger premises, says Dr Haresh Gupta, Chief Programme Officer-Medical and head of PPCC and Pediatric Cancer Research Institute (PCRI). The new location will enable CanKids to expand facilities for inpatients and outpatients, give a boost to day care, transition home and hospice, resource, learning & research.  |
AuthorKavita Charanji 
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