Childhood Cancer International's President tells us about the impact of COVID-19 on the perception of access to paediatric cancer care
João de Bragança is the president of the Childhood Cancer International, as well as Acreditar (Portuguese Association of Children with Cancer). We are so grateful to host him on the blog as he tells us more about the pandemic impact on childhood cancer care. Many thanks to Dora Correia for connecting us with CCI!
For a substantial part of the world “pandemic” is a neologism. They may have used it for the first time in 2020, when COVID-19 invaded our homes, our routines, our lives. Interestingly, the word of the year in 2020 in Portugal (my home country) was “saudade”, an expression difficult to translate, but meaning to miss something or someone. People remembered not what invaded them, but what they lost with the invasion.
From a health perspective, there is an obvious relationship between COVID-19 and people with respiratory problems, obesity, or other diseases. In a sense, the relationship between the virus and pediatric oncology is more tenuous: children and adolescents, even if immunocompromised, are less likely to catch or transmit the virus. Nevertheless, the community of children with cancer was strongly affected by the pandemic: either directly, due to possible parental disease, or less directly, due to the damages caused to the world around them, a fundamental comfort bubble for their fragile balance.
What is Childhood Cancer International?
Childhood Cancer International
was founded in 1994, as an umbrella organization of childhood cancer grassroots
and national parent organizations. Today, CCI is the largest patient-support
organization for childhood cancer. It is a global, parent-driven non-profit
that represents more than 170 parent organizations, childhood cancer survivor
associations, childhood cancer support groups, and cancer societies, in over 90
In the midst of the pandemic, CCI realised that it should assess the impact of COVID-19 on the perception of access to cancer treatment of patients, families, survivors, and non-governmental organisations (NGOs), and also its impact on the emotional and psychosocial aspects of paediatric cancer care. To raise awareness, either locally or globally, it was important to know what was happening.
The results of the survey were presented at a seminar on the 4th June 2020, organized in collaboration with St. Jude Children’s Research Hospital. The pandemic was just beginning, but our community was already feeling its effects.
69 CCI member organizations from 52 countries, covering high-income countries (HICs) and low- and middle-income countries (LMICs), completed the survey, which addressed 4 main areas:
1. Impact for NGOs and Parents (financial and service-related)
2. Treatment and Medical Questions (worries about access to medicine, delays in treatment, telemedicine)
3. Survivor Issues
4. Emotional Impact of the Pandemic, Psychosocial Issues, Knowledge and Information Requirements
It’s not within the scope of this text to share all the results, only to highlight some areas that can explain major challenges we faced and are still facing.
What was the financial impact of COVID-19 on our member organizations?
· “We are providing food and transportation so that the kids can get to their appointments in time.”
· “Maybe the organisation does not exist as it is in few months.”
The lack of funding has a direct influence on our NGOs:
- 85% of the NGOs had to modify some, many, or all of their programs.
- 70% had some to all programs cancelled.
- · 1/3rd had to reduce or close family homes. For families who have to travel great distances for treatment, these family homes were essential to maintaining care.
The survey also sought to find out the impact of COVID-19 on treatments.
Some comments mention that lack of public transportation due to lockdown, or that “some original drugs which [were] produced abroad are discontinued and it’s difficult or impossible to buy them now”.
There is a general idea that telemedicine will play an important role in the future. Eight or nine months ago it was something new, and we wanted to know what the families’ concerns were:
- “The fear of missing some important detail is great.”
- “Will be needed more and more in the future. Needs to be leveraged.”
- “Communication has to be improved, giving parents enough time to ask all the questions they would raise in a face-to-face visit.”
Last but not the least, we wanted to understand the emotional impact.
What were the main reasons behind this situation?
· The entire health system focused on COVID-19.
· The limited number of people who could accompany the patient.
· Survivors worried about their vulnerability to COVID-19.
· Many parents had lost income, which was hugely stressful.
The impact of COVID-19 on our member organisations has a direct impact on the wellbeing of our children: there are fewer programs for families, and services like homes/transportation, registries, nutrition programs are at risk. Many NGOs (with much fewer resources) had to provide food or financial support to families.
Globally speaking, we must look at the reality of childhood cancer from the extremes of a continuum:
- “Left unaddressed, we estimate that a total of 11.1 million children will die from childhood cancer between 2020 and 2050.”
- In September 2018 the World Health Organisation (WHO) announced a new effort – the Global Initiative for 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.
If the death of one child is a tragedy, 1 million lives saved cannot be statistics: each one of them will have a name, a dream, a future. Childhood Cancer International, as the collective voice of patients, survivors, and their families, is in a decisive position to collaborate in this global effort, giving a name and a future to each one of these 1 million children.
João de Bragança,
President, Childhood Cancer International
President, Acreditar (Portuguese Association of Children with Cancer)
 “Sustainable care for children with cancer: a Lancet Oncology Commission” [The Lancet Oncology Commission, Vol. 21, April 2020.]