Calling all advocates -- to the states!
“Few of us have the bandwidth to conquer our challenges alone, but together we can move mountains for our kids. ”
Thousands of individuals and families touched or affected by childhood cancer are compelled to organize in one form or another: to raise money for research, volunteer with an organization or hospital, provide support services, or even to create a foundation of their own.
Many - like those of us at the Children’s Cause - have also looked to improve the environment for childhood cancer through public policy: advocating for new drugs, access to treatments, how those treatments are paid for, and how patients and survivors navigate the journey.
There’s no shortage of issues that need fixing and the first instinct for many childhood cancer advocates is to look to Washington. But many issues affecting children with cancer and their families are best addressed, with more impact, at the state and local level.
Fortunately, there are scores of childhood cancer advocates working in state capitals, pushing for better treatments, access and care for patients, families and survivors. Unfortunately, they’re often working alone or with limited resources. To support those advocates, Children’s Cause has launched a state advocacy program offering “air cover” and coordination to those working in their state capitals. We can’t to be on the ground in every state, but working with local advocates, we can electronically send out “action alerts” to our state network of supporters to help in their campaigns. We can send endorsement letters to legislators. We can produce letters to local newspapers. And - perhaps most importantly - we can facilitate coordinated efforts in those state campaigns by breaking down silos, with such efforts as conference calls and pooling our resources.
I was privileged to briefly work in another patient community – food allergies – and was inspired by their organic, grassroots coordination: parents fiercely determined to protect their children from social and environmental dangers. Targeted emails to legislators, coordinated endorsements and capital visits and, critically, coordinating calls to share experiences and tactics have succeeded in making a noticeable difference in attitudes and accommodation. Have you noticed food allergy symbols on restaurant menus or been asked by your server if you have a food allergy? Those, and others, are a direct result of advocacy teamwork and I’m convinced we can make huge strides in the childhood cancer community too.
In several states, there are already bills pending that provide pediatric cancer research funding through vehicle registration, bills that require insurance coverage of fertility preservation and bills that facilitate remote learning for kids in treatment (on that last one, see our action alerts in New York and in Pennsylvania!). Dedicated advocates are pushing for those bills and they need help. At Children’s Cause we’re committed to supporting them — and we hope you’ll join us.
We’ve got a new resource on our website, where you’ll find a listing of measures that have been pushed by other childhood cancer advocates as well as pending legislation, a listing of state legislative web sites and some sample materials: State Advocacy in 2019.
Do you want to get involved in a state effort, but don’t know who to contact? Let us know and we’ll help offer direction; either with an organization that is working on an initiative or connecting you with other advocates in your state.
This effort, like so many in our community, depends on our ability to join together and support one another. Few of us have the bandwidth to conquer our challenges alone, but together we can move mountains for our kids.
If you have any questions – or suggestions – you can contact us at info@childrenscause.org