Cankids...Kidscan

Vol. 05                                                                                                                       July 20th, 2019

Delhi: June 24th, 2019

In September 2018 WHO announced a new effort- the WHO Global Initiative on Childhood Cancer- with the aim of reaching at least a 60 % survival rate for children with cancer by 2030, thereby saving an additional one million lives.

Cancer is a leading cause of death for children, with 300,000 new cases diagnosed each year among children aged 0-19 years. Children with cancer in low and middle-income countries are four times more likely to die of the disease than children in high-income countries. This is because their illnesses are not diagnosed, they are often forced to abandon treatment due to high costs, and the health professionals entrusted with their care lack specialized training.

To focus attention on ‘’Childhood Cancer’’ and to discuss the World Health Organization (WHO) Global Initiative on Childhood Cancer, a stakeholder meeting was organized on 24^th June 2019. There was representation 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 Cankids KidsCan. The town hall was held at Max Super Speciality Hospital, Saket and sponsored by Cankids.

Top Row Standing L-R: Mr. Mukul Marwah, Mr. Harsh Kumar, Dr. Haresh Gupta, Mr. Sham Lal, Mr Srinath Mukharjee, Prof Jagdish Chandra, Dr. Girish Chinnaswamy, Dr. Scott Howard, Mr. Nirbhay Singh, Mr. Yasoob Mustafa.

Middle Row Standing L-R: Dr Tulika Seth, Ms. Jennifer Lowe, Dr. Catherine Lam, Dr. Nishant Verma, Dr. Shripad Banavali, Dr. Carlos Rodriguez-Galindo, Dr.Gauri Kapoor, Dr. Ramandeep Arora, Dr. Deepak Bansal, Ms. Meeta Khurana, Dr. Nita Radhakrishnan, Ms. Sonal Sharma, Ms. Jyotsna Sharma, Ms. Rashi Tripathi, Ms.Tanvi Dogra.

Bottom Row Seated L-R: Dr. Piali Mandal, Dr. Prachi Jain, Dr. Nandini Hazarika, Dr. Satyendra Katewa, Dr. Vikramjit Kanwar, Ms. Poonam Bagai, Dr. Sunil Bhat, Dr. Mamta Manglani, Ms. Huma Anis, Dr. Rachna Seth, Dr. Sirisha Rani, Dr. Ratna Sharma, Dr. Sunita Saxena, Ms. Sonia Sekhri.

Venue :- Max Super Speciality Hospital Saket, New Delhi

This session was moderated by Ms. Poonam Bagai and Dr. Ramandeep Arora. The following actions proposed during the session:-

1. Advocacy with central and State government to make childhood cancer a health priority in India.
2. National Childhood Policy.
3. List of good quality medicine.
4. Good standard of care at hospitals treating children with cancer.
5. Identify 5-10 Pediatric Oncology Centres in every region wise to measure progress.
6. Forms group to take up various issues related to childhood cancer.
7. Priority of childhood cancer and timelines for each action.
8. Common guidelines for treatment and care.
9. Work with National Cancer Grid.
10. Testing for good quality drugs.
11. Baseline data in digital platform.
12. Map the portability with Ayushman Bharat.

                Session Report by Ms. Ritu Bhalla- CanKids India 

Regional workshop to accelerate cancer prevention and control in the South-East Asia Region
A two-day Regional Workshop to accelerate cancer prevention and control in the South-East Asia Region was conducted from 25-26 July in New Delhi. A total of 79 participants attended the workshop comprising of the representatives of 10 Member States (Bangladesh, Bhutan, India, Indonesia, Maldives, Myanmar, Nepal, Sri Lanka, Thailand and Timor-Leste), experts, WHO at all three levels, agencies, nongovernmental organizations including cancer survivors. The Regional Director Dr Poonam Khetrapal Singh addressed the opening segment of the workshop, followed by a lecture on policy perspectives on cancer control by Mr Rajeev Sadanandan, former Health Secretary, Government of Kerala, and I delivered an opening statement on my cancer experience, childhood cancer scenario, demonstrating reasons to take it as a key priority and raising key demanding questions as a call to action.

The main objectives of the workshop were:

• To update Member States on the global initiatives and recent developments in cancer prevention and control within the context of 25 by 25 NCD targets and 2030 SDGs.
• To identify prioritized areas for capacity strengthening to accelerate cancer prevention and control in the Region.
• To support Member States to identify key leverage points for accelerating national cancer control activities including cancer registry and information system.

Key Important discussion points:

1. Include cancer in policies and packages at all levels, as cost of inaction is too great- enhance governance for cancer control at Ministry of Health
2. Time-bound, adequately financed operational national/sub national plans are the key for acceleration
3. Prevent cancer when preventable
4. Screen when beneficial
5. Diagnose early, treat effectively, and palliate all through integrated health systems approach.
6. Health for all has to be health with all: include patients and survivors
7. Address knowing-doing gaps: invest in monitoring and evaluation & information systems including population-based cancer registries to define, track and drive progress
8. A road-map of accelerators was worked out in the end to guide Member States to accelerate cancer control in the Region.

We were the only two people invited from the NGO/Civil Society  and pediatric oncology community in India, as representatives of Patient Voice.  Ritu, my mentee and our KidsCan Konnect Leader and Girl Child Cancer Ambassador was invited to make the Opening Statement for this workshop as a Survivor Leader to share her story.

In a new departure, WHO SEARO asked Ritu to make her opening statement ahead of the Welcome Address by Regional Director – Dr. Poonam Khetarpal Singh. Ritu completely rocked it!

She was poised and confident as she read out her Statement, talking of her own journey and that of her friends and other cancer patients, addressing the challenges and barriers faced by patient families. From the leaders of Member States of the region she asked for access to better treatment, care and support and demanded her human right and that of all Childhood Cancer patients to Health, Education, pain free and palliative care, to childhood. In the War against Cancer being fought in our country, Region and indeed worldwide, - a war that needs all stakeholders to come together, she offered her help, that of the childhood cancer communities, and importantly the Voice and the Engagement of patient families and patient groups like ours.

For the next 2 days of deliberations and planning, member State leaders from Government, health sector and WHO offices regularly referred to Ritu and points raised in her Statement. Regional Director Dr Khetrapal Singh thanked Ritu for highlighting through her own example and that of her friends how delays in diagnosis, poor access to care and challenges of treatment, infrastructure and resources must be addressed in low middle income countries of the region for childhood cancer and for all cancer control.   

I am so proud of Ritu and all our empowered survivors of Kidscan Konnect, Ugam and Childhood Cancer International, who are committed to giving back to the cause and becoming Childhood Cancer Ambassadors. They are voice of Childhood Cancer and this time WHO and Member State of South East Asia Region heard that Voice. 

I am deeply grateful that WHO, the world’s leading authority that directs and coordinates international health work, has given so much importance to the Patient Voice.  Thank you Dr Thaksapon Thamaransi, Director, & Dr Gampo Dorji, Department of Non Communicable Diseases and Environmental Health, WHO SEARO, New Delhi.

Contact Us :- communications@cankidsindia.org
Communication Education Public Awareness & Advocacy (CEPAA) Department