Below the letter of our newly elected chair, Carmen Auste (from the Philippines). In it she traces the highlights of the 20 year journey of ICCCPO and the achievements of ICCCPO and its member organizations.
Dear Collegues and Friends,
First of all, let me tell you how honoured and privileged I feel to have the opportunity to serve and work with you as your new Chairperson. Having interacted with many of you through the past years, we are looking forward to collaborating more closely with you, as we move towards “Scaling Up Initiatives and Creating Breakthroughs for Children and Adolescents with Cancer and Survivors.“
This year marks a significant milestone in our organizational life
Last May, we retraced our beginnings and celebrated our 20th anniversary in Valencia, Spain, the same place where ICCCPO started its journey.
Twenty years ago, parents from 11 European countries and the USA, gathered in Valencia and declared their belief that every child with cancer should have the chance to be cured. They made a promise to children with cancer everywhere in the world, committing to share information and experience, to improve access to the best possible care.
Since then, ICCCPO (now Childhood Cancer International) has been true to these commitments and has kept alive the spirit of Collaboration, Caring and Innovation.
Through the unwavering dedication and passion of member organizations like yourselves, ICCCPO gained visibility and the support of diverse stakeholders from different sectors (e.g. medical community, private businesses, academia, faith based organizations, civil society organizations etc.).
Across continents and regions, we are now recognized as childhood cancer champions and prime-movers
Our members speak out, stand up and build strong connections to promote and protect the rights and best interests of children and adolescents with cancer, the survivors and their families. They spearhead collaborative initiatives that call attention to the need to urgently address the concerns and needs of children and adolescents with cancer, the survivors and their families.
Our membership base has continued to grow in scope and diversity
We are now 177 members strong in 90 countries with a mix of grassroots organizations and national networks in Europe (60), Asia and Oceania (50), North, Central and South America (49) and Africa (18). This wide expanse and diversity allows us valuable opportunities to gain information and insights into the needs, concerns and challenges of families of children with cancer, in both developed, high resource countries and struggling, low middle income countries.
In the past years, our member organizations have continued to focus on five key areas which characterize who we are and what we do as an organization.
- Access to Care (Strengthening support and access to care for children and adolescents with cancer, the survivors and families of children with cancer);
- Awareness Building (Intensifying awareness for early and accurate diagnosis of childhood cancer);
- Advocacy (Driving policy change and health reforms on childhood cancer);
- Capacity Development (Escalating dialogue and enhancing capacities on childhood cancer; conducting meetings, trainings, learning sessions and convening Regional and Annual International Conferences (in collaboration with SIOP);
- Partnership Building and Networking (Expanding partnerships and alliances; creating more supportive and favorable environments for children and adolescents with cancer, the survivors and families of children with cancer).
For 2014, the specific details of these initiatives across regions and continents are well captured in the Annual Report that we have recently emailed to you.
However, despite the substantial and significant achievements of all of you, many key challenges remain
- Childhood cancer has not achieved the level of support, sense of urgency and momentum it requires. It is not yet an integral and important part of national and global health and development agendas and platforms.
- The true and complete global burden (i.e. actual number of children who are diagnosed,, who die and who survive ) of childhood cancer is unknown. Many countries do not have functional hospital and national registries.
- Access to care of children and adolescents with cancer and survivors is marked by huge inequities, even within the same country or region. Accessibility, availability and affordability of childhood cancer drugs remain a major barrier to timely and adequate high quality care. WHO guidelines on pain treatment and pediatric palliative care are not consistently and fully implemented.
- Children with cancer and survivors face discrimination and bias, in a number of countries and regions.
We have discussed these challenges and proposed 15 action commitments for the next three years, in a separate document. You may want to use it as a conversation tool to be shared and reviewed with your leadership team, volunteers and members.
The commitments are ambitious, audacious even, but if there is one thing that the cancer journey has taught me, it is that with courage and conviction, impossible becomes possible, dreams become reality. Working on this as our guide, we can create a better future with better outcomes for children and adolescents with cancer, the survivors and their families.
Two iconic and contrasting figures of our generation, US President John F. Kennedy and celebrity child health advocate, Brad Pitt, have inspirational statements I would like to share with you all.
JFK reminds us: “Children are the most valuable resource and its best hope for the future. When a child dies, the whole world suffers.” Indeed, every death is one too many. Each life lost is an irreplaceable part of our shared future. This is why we need to scale up (i.e. expand, enhance) our initiatives, deepen our partnerships and reach out to more stakeholders.
Brad Pitt challenges us: “Let us be the ones who say we do not accept that a child must die every three seconds, simply because they do not have the drugs they need or the money to pay for it. Let us be the ones who say, we are not satisfied that a child’s place of birth determines their right to live. Let us be outraged. Let us speak out loudly. Let us be bold.”
I believe we are now speaking loudly but we need to be able to help create that sense of outrage and urgency among decision makers, political and health leaders and other key stakeholders. We need to be bold to do things differently and to do different things. I look forward to hearing your bold ideas and audacious goals on how to make this happen.
Finally: Alone, we can make some difference but Together, we can create sustainable, lasting changes.
Building on our past successes, let us courageously chart innovative and enhanced pathways for improved survivorship, better outcomes for children and adolescents with cancer and healthier, happier, more productive futures for survivors.
Let us continue to honour the courage and the memory of the children that have been taken from us. Let us work together to stop the needless suffering, pain and death of our young.
The CCI board and I look forward to hearing from you. Do send us an email to let us know your thoughts and which of these challenge areas you would like to be involved in. You can also choose which action commitments you want to pursue or contribute to.
All the best always,
Carmen Auste, Philipines
Chair of CCI