SAFER Ukraine - The Power of the Global Pediatric Oncology Community

For the last few weeks, we have all watched with horror at the unfolding events in Ukraine. The casualties of war are not only the armed forces personnel, but also civilians (men, women and children) in Ukraine who have been caught in the cross-fire and the bombings of residential areas, theatres, markets and even hospitals.

According to https://en.wikipedia.org/wiki/2022_Ukrainian_refugee_crisis "More than 4.5 million refugees have since left Ukraine (as of 9 April 2022), while an estimated 6.5 million people have been displaced within the country (as of 18 March 2022). In total, more than ten million people – approximately one-quarter of the country's total population – had left their homes in Ukraine by 20 March. By 24 March 2022, according to UNICEF, more than half of all Ukrainian children had been forced to leave their homes."

Through these incredibly difficult times, there are many examples of individuals and groups which have come forward to the aid of the Ukrainian citizens.  One such example is the SAFER UKRAINE initiative which stands for Supporting Action For Emergency Responses in UKRAINE and has been set up by St Jude Global along with multiple partners from the global pediatric oncology community including SIOP (International Society of Pediatric Oncology) and CCI (Childhood Cancer International).

SAFER Ukraine has established a virtual command center to coordinate evacuations and ensure treatment continues for pediatric oncology patients. The process includes determining transportation logistics and identifying high-risk patients who are deteriorating. The SAFER Ukraine team and volunteers translate medical records, coordinate departure travel and manage the logistics of transport across the border. In addition to the above efforts, the team also established a triage clinic in Poland. Patients and their families can rest and recover from the evacuation while awaiting assignment to a clinic for continued treatment.

Through these efforts, more than 800 Ukrainian children with cancer have been registered and over 500 have been transferred to clinics in Poland, Germany, Italy, Netherlands, France, Spain, United Kingdom, Czech Republic, Austria, Switzerland, Canada and USA. In my 15 years of experience of engaging with the global pediatric oncology community (which has always been sensitive to healthcare disparities and has continually worked to improve the outcomes of those in resource-limited settings) such a concerted advocacy and humanitarian effort is unprecedented and I can only applaud and wish them well. 
 

International Childhood Cancer Day 2018

15th Feb is celebrated as International Childhood Cancer Day every year across the world. This day celebrates those who have successfully conquered this disease and remembers those who did not make it. It spotlights the problem and the solutions. It brings together all stakeholders who are fighting to address this problem.

On this occasion several international and national organisations take a renewed pledge of commitment to these patients. Below are two press releases - the first by SIOP and CCI and the second by Cankids

Together for Advancing Cures, Transforming Care, Instilling Hope

Geneva, Switzerland - February 15, 2018 - International Childhood Cancer Day (ICCD) is celebrated around the world each year on February 15th. Originally commemorated in 2002, ICCD is a day founded by ChildhoodCancer International (CCI), a global network of 188-member organizations in 96 countries. Childhood Cancer International is committed to advancing cures, transforming care, and instilling hope for all children and adolescents diagnosed with cancer in the world, wherever they may live. Established in 1969, the InternationalSociety of Paediatric Oncology (SIOP), with over 1500 healthcare professional members, is the lead organization concerned with the issues of treating children and young people who have cancer. SIOP is committed to improve childhood cancer care globally through education, supporting and improving clinical and basic research and advocating for childhood cancer on a global level. Both societies share a long and fruitful synergistic cooperation. 

Childhood Cancer International and SIOP are not alone in recognizing the devastating impact of childhood cancer on children and families around the globe. In September 2011, the United Nations (UN) General Assembly issued a Political Declaration recognizing four major Non-Communicable Diseases/NCDs (cancer, cardiovascular disease, diabetes and chronic respiratory disease) as the greatest killers of adults and children. 

Sadly, childhood cancer continues to be the leading cause of non-communicable related death in children throughout the world. Globally, more than 300,000 children are diagnosed with cancer each year. Approximately 80 percent of our world’s children with cancer live in low-middle-income countries (LMICs) where more than 80 percent of these children die of their disease. In developed countries like the United States, Canada, United Kingdom, Japan and others, more than 80 percent of children survive cancer with hope to live productive and meaningful lives. 

On December 13, 2017 a new report from WHO and the World bank revealed that approximately half of the world’s population, including children, do not have access to essential health services and that 800 million people spend at minimum 10 percent of their household income on health-related care. Childhood cancers are often curable but too many children and adolescents have no hope to overcome their disease simply because they were born in a country entrenched in poverty resulting in late diagnosis, lack of access to life-saving essential medicines and appropriate treatment. As childhood cancer organizations, we know only too well that the associated cost to treat a child with cancer can be a burden that too many families simply can’t overcome. We support the need for universal access to essential medicines and healthcare for all children in the world diagnosed with cancer. In order for this to happen, CCI and SIOP agree that making childhood cancer a national and global child health priority is a critical first step towards increasing access to treatment and reducing childhood cancer mortality. 

All children in the world deserve hope for a cure - no matter where they live - not more excuses. We can no longer sweep this issue “under the rug.” Children are the future of our country and our world. Their vitality is the heartbeat of our world, a shared passion that can unite us because our future as a global community depends on it. 

On International Childhood Cancer Day, all members of Childhood Cancer International and SIOP stand united to make childhood cancer a national and global child health priority to ensure there are adequate resources to meet the basic rights of children with cancer. We believe those basic rights for all children diagnosed with cancer include: 

• The right to early and proper diagnosis;
• The right to access life-saving essential medicines;
• The right to appropriate and quality medical treatments, and; 
• The right to have access to sufficient palliative care;
• The right to follow up care, services and sustainable livelihood opportunities for survivors. 

There can be no more ‘but.’ United together towards a shared vision we can advance cures, transform care, and instil hope. For further actions please visit the official ICCD 2018 Campaign Website www.internationalchildhoodcancerday.org 

RAISE YOUR VOICE TOGETHER WITH CHILDREN WITH CANCER 

I DESERVE – MY CHILDHOOD MY LIFE

New Delhi 15th February 2018 

February 15th is celebrated worldwide as International Childhood Cancer Day – aimed at creating awareness and advocating for childhood cancer as much for honoring the bravery and courage of children fighting cancer in our State, country and worldwide. 

Internationally Childhood Cancer Day is spearheaded by Childhood Cancer International – an umbrella organization of 188 parent, survivor and social support organizations like Cankids, in collaboration with SIOP (International Society of Pediatric Oncologists). http://www.cankidsindia.org/iccd-2018.html) 

Every year Cankids Kidscan, National Society for Change for Childhood Cancer, and member of Childhood Cancer International (CCI) celebrates ICCD across the country. Last year, 1580 children with cancer from 21 cities across India attended the ICCD celebrations. Children at all centers visited a monument of the city to celebrate ICCD and teachers educated children about the monument and how it symbolizes victory in some battle. The “We Are One” Childhood Cancer solidarity song was translated into regional languages and sung by children in different cities.

This February 15th, 2018 happy to inform you that this year we are doing it in a much bigger and grander way together with many other NGO partners and childhood cancer treating centers. 

Our theme for ICCD is Go Gold India – Mera Haq, Mera Bachpan, Mera Jeevan – I Deserve My Childhood My Life. Families will participate in “I Deserve competitions and we will have kite making activities at the Learning activity Clinics in OPD and Wards, where children will make kites and together with their families write their prayers and messages. Children will be taken for an outing to a park where they can fly kites. The messages on the kite will reflect our theme and advocate to the governments that “Childhood Cancer should be a Child Health Priority in India”. We will be celebrating ICCD at all our 51 centers as well as those of our partners, across India. 

Childhood Cancer is the low hanging fruit for a country’s cancer control program. In 2015 Cankids…KidsCan Launched The Go Gold India- Survivor Led Advocacy Campaign with 8 demands – To make Childhood Cancer Child Health Priority in India- a clear childhood cancer control plan and policy, more and dedicated pediatric oncology cancer centers, better and qualified manpower and health professionals, affordable but quality treatment and drugs, focused interventions for specific childhood cancers that are highly curable like Hodgkins Lymphoma, Retinoblastoma (eye cancer) and Wilms Tumor (kidney cancer), acceptance of the age of childhood cancer upto 18 years of age, and family and civil society engagement. 

Happy International Childhood Cancer Day

Today is International Childhood Cancer Day. It is an opportunity to focus the attention of the public, the health professionals and the government on this cause. International and national efforts are underway and you can read more about them at the following links

http://www.internationalchildhoodcancerday.org/

http://www.cankidsindia.org/iccd-2017.html

Below is a very useful infographic prepared for this occasion.

We Are One!

Earlier this year, Childhood Cancer International, the largest patient support organization for childhood cancer with 181 member organizations in 90 countries, teamed up with Christophe Beck, famous for his creation of the soundtrack to Disney’s smash hit Frozen, and his 12-year-old daughter to record a new song, “We Are One,” written just for International Childhood Cancer Day (February 15th). While the verses are sung by up-and-coming musical talents including Sophie Beck, Alexa Curtis (winner of The Voice Kids Australia 2014), Livvy Stubenrauch (the voice of Anna in Disney’s Frozen), and Robbie Firmin (Britain’s Got Talent), the chorus is a global choir of all the children who participated in this amazing event! The creative responses have been overwhelming with More than 900,000 children and teens recorded their voices singing the chorus to the song, creating dances, lip-syncing videos, and even creating some amazing covers! Here is the official video below. Enjoy!