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. 
 

Podcast on perspectives of caregivers of children with cancer in India on their journey to accessing timely cancer diagnosis and treatment

I am glad to share a podcast https://www.ghccpod.com/22-the-labyrinth/ was conducted by Dr Mark Zobeck based on one our recent pieces of work in trying to understand the experiences of the caregivers of children with cancer in India as they obtain their diagnosis and start treatment.

I quote from his link

How does a child with cancer in India access care?

If you’ve ever had an illness that was difficult to diagnose, you know that navigating the medical system can be incredibly frustrating. Bouncing back and forth between doctors, taking time off of work or school, waiting for hours upon hours, all while you don’t feel well and do not know what is going on with your body is enough to drive anyone crazy. Unfortunately for families of children with cancer, they know this feeling all too well. Childhood cancer can be very difficult to diagnose and the journeys that families undergo to find answers and receive care can be long and grueling. 

To better understand these journeys, Drs. Neha Faruqui, Ramandeep Arora, and their colleagues have studied what they call the “healthcare labyrinth” of accessing childhood cancer care in India. Through discussions with parents and caregivers, they classified the major themes that contribute to difficult or prolonged paths to care. Today on the podcast, we will discuss their findings from their many hours of listening to the families’ stories. 

I would encourage anyone listening to the podcast to also read their paper. As I say in the podcast, it reads more like a novel than a journal article, and I found myself emotionally invested in the way the parents described their journeys. It made me appreciate anew how important it is to establish robust health systems that can rapidly identify patients and refer them to appropriate tertiary care.

Lastly, this discussion is not meant to be a criticism of the Indian healthcare system. It is an enormous system that is responsible for caring for 1.3 billion people! There are many things it does very well! But of course, there are things that can be improved. As Dr. Arora says in the episode, this paper, and our discussion is about listening to the caretakers to discover how providers everywhere can better care for not only the patient during treatment but for the entire family through the entire cancer experience. 

Read the full study here: https://bmcpublichealth.biomedcentral.com/articles/10.1186/s12889-019-7911-x