Advocating for Childhood Cancer Resources on Capitol Hill

This week we were on Capitol Hill in Washington DC, meeting with our state representatives to request continuation and expansion of resources to fight childhood cancer.
We had meetings with Congresswoman Ayanna Pressley’s staff, House Minority Whip and Congresswoman Katherine Clark’s staff, Senator Ed Markey and his staff, and Senator Elizabeth Warren’s staff. We also had a brief meeting with Katherine Clark for a photo opportunity. We’ve included a picture of us with Ed Markey as we don’t yet have the pictures with Katherine Clark.
Specifically, we were asking our representatives for the following:
  1. Increase funding for the National Institutes of Health (NIH) and National Cancer Institute (NCI) by providing $50.924 billion for the NIH and $9.988 billion for the NCI in Fiscal Year 2024. A portion of this funding goes to childhood cancer.
  2. Provide $30 million to fully fund the Childhood Cancer STAR Act for a sixth year and $50 million to fully fund the Childhood Cancer Data Initiative for a fifth year.
  3. And for our congressional representatives to join the Congressional Childhood Cancer Caucus.

Having never done this before we didn’t know what to expect. The sheer size of the Capitol and all the related buildings is definitely daunting up close. And the number of people involved in just this part of our federal government is amazing. I was also surprised by the number of other groups lobbying for their causes. Our reps all say their offices are open to their constituents, and people are always welcome. Of course that’s the right policy, but I can also see how hard it is to get anything done at all in the government, let alone dealing with the actual politics etc.
Childhood cancer has been and should continue to be something that everyone can get behind and support, so hopefully these asks will be supported not only by those we visited. But the countless other representatives that others that our larger group met with as well. 

Now you may be wondering, how did we get to Capitol Hill? We were invited by Dana-Farber, who recently joined the Alliance for Childhood Cancer. The Alliance is a group of about 20 different organizations collaborating to advance research and policies to prevent cancer, improve public education, and the diagnosis, treatment, supportive care and survivorship of children and adolescents with cancer.  We were all there as part of Action Days, with nearly 300 families and advocates for childhood cancer meeting with our federal representatives.

We were joined by the Dana-Farber Government Affairs team, and another Massachusetts family that lost their son to cancer just a short time after Zach passed. The Dana-Farber team focused on the specific legislative asks and each family told our respective stories about our sons’ battles.

After sharing Zach’s cancer story, we highlighted things we’ve learned from him and this journey, specifically to Move With Urgency, and to Be Like Zach and Keep Moving Forward. It was an honor to be asked to do this. All the teams from our representatives said they “would make this a priority,” which I hope and would like to believe it actually will be a priority.

Thank you Dana-Farber for inviting us and to the Alliance for Childhood Cancer for making this effort possible.

On our day on the hill we were walking past the back of the Capitol and I saw a man sitting at the bottom of some steps, head bowed down towards the ground. He was sitting in that position for quite some time. I don’t know what he was there for or how he was feeling. But I’d like to think that whatever he was there was there was similar to our battle against pediatric cancer.

It’s an uphill battle. The issue we face here is an enormous one, and while there is a large, strong community working together to try to improve cancer treatment, outcomes and support, we need the collective of our entire government and country to try to make inroads faster than we ever have before.