The Critical Importance of Local Advocacy and Awareness Building
There was a time, in the not-too-distant past, when people didn’t realize that kids could get cancer too, when people didn’t know the devastating statistics about childhood cancer:
- that it is primary cause of disease-related deaths among children in the United States today;
- that 1 in 285 children will be diagnosed with some form of childhood cancer every year;
- that some forms of childhood continue to have less than a 10% survivorship rate.
There was a time when deaths from childhood cancer weren’t discussed, shared, or even talked about.
Thankfully, that time has passed! Thankfully, more and more individuals, families, and whole communities are taking it upon themselves to become childhood cancer advocates, supporting and helping local families facing the everyday challenges that arise when a child is in treatment, raising awareness within schools and communities by proudly displaying the gold ribbon, and organizing and participating in fundraisers and awareness events on behalf of children battling childhood cancer. Thanks to these efforts, these children and their families now know that they are not alone, that they are loved and supported by their friends, their neighbors, and even complete strangers.
Our Mission: Advocacy through National and International Partnerships and Collaboration Networks
Ruth I Hoffman, MPH, Director ACCO; Dr. Oleg Chestnov, Assistant Director-General for Noncommunicable Diseases and Mental Health, World Health OrganizationAt the American Childhood Cancer Organization (ACCO), we proudly promote and support awareness-raising programs and local advocacy efforts on behalf of children facing cancer and their families. But that is only part of our mission. The other part of our mission is, perhaps, less obvious and less visible, but it is surely no less powerful and no less effective. So what is the other part of our mission?
We give childhood cancer victims and their families a voice within the highest levels of policymaking and government, both nationally and internationally.
- We build partnerships with childhood cancer champions around the world, sharing with them the ideas, expertise, and resources they need to lead the fight against childhood cancer.
- We foster collaborative networks with experts, NGOs, pharmaceutical companies, and government groups to facilitate their ongoing cooperation in the fight against childhood cancer.
- We promote the active engagement of policymakers and lawmakers in the war against childhood cancer, constantly reminding them of the critical importance of their role in this fight.
Advocacy of this type can be frustrating. It isn’t flashy or eye-catching, it doesn’t always produce results that you can easily see and get excited about. It often results in slow, small, incremental changes, the results of which may not always be immediately obvious. But it works! Slowly, surely, it works!
Advocacy that Works: Success Stories!
Because the success of collaborative advocacy and partnership building is often subtle and long-term, it can sometimes be difficult to pinpoint the specific result of a particular action. But we would like to highlight a few “success stories”:
The Star Act
The ACCO co-authored the Childhood Cancer STAR Act (Survivorship, Treatment, Access and Research (H.R. 3381/S. 1883) and continues to actively promote its passage into law. The STAR Act will help address the funding gap facing the NCI and in particular the Children’s Oncology Group, which funds most clinical trials relating to pediatric cancer.
The Creating Hope Act
The ACCO worked for the passage of the Creating Hope Act in 2012 in order to encourage pharmaceutical companies to develop drugs specifically targeting childhood cancer by offering them priority FDA review for more profitable drugs if they do so.
“Target Childhood Cancer” Initiative
The ACCO actively engages with government officials who are proposing development of “targeted therapeutics,” drugs that target childhood cancer at the molecular level, at university research institutes instead of pharmaceutical companies.
WHA Side Event on Childhood Cancer
The ACCO was the US Advocacy Voice at the first ever World Health Assembly Side Event on Childhood Cancer in May 2015, acting as the host of the Geneva Reception and Dinner for representatives from the WHO and important international childhood cancer leaders from around the world. One of ACCO’s Board Members gave a keynote address at this event!
The ACCO is:
- The sole US member of Childhood Cancer International (CCI);
- A participating member of the World Health Organizations’ Childhood Cancer Task Force;
- The Secretariat for the Alliance for Childhood Cancer.
This is only a short list demonstrating only a few of our success stories. But they clearly show that success is possible! With patience and determination, clear goals and firm partnerships, we can:
- Promote programs that advance federally-funded research specifically for childhood cancer;
- Close the funding gap that threatens to derail recent advancements in research and drug development;
- Advocate for legislation that brings greater attention and awareness to childhood cancer and makes it a greater funding priority;
- Collaborate with pharmaceutical companies to encourage them to pursue and test new drugs designed specifically for children;
- Empower parents, professionals, and political leaders around the world to raise awareness, develop better fundraising, and especially ensure critical access to basic medical care; and most importantly,
We can look forward to a day when no child or family, in the United States or around the world, has to suffer alone and in silence, when no child has to die due to lack of access to treatment or even basic medical care.
We can look forward to a day when individuals and communities, government officials and medical experts, in the United States and around the world, join together as global advocates in the critical fight against childhood cancer.