Authored by Jessica Kean
As the Communications Director at the Children’s Cause, I write most of the blog posts you’ll see here, speaking on behalf of the organization and with the aid of the rest of our team. But today’s blog is a little bit different. I’m stepping out from behind the curtain to share a personal perspective, because this weekend marked a special milestone for me.
Ten years ago marked my first day on the job with the Children's Cause for Cancer Advocacy.
I never would have guessed in August 2007 that I’d still be working here a full decade later. It was my first “real” job out of college. I had no interest in staying in DC long-term. I had no connection to or knowledge of childhood cancer. And I had very little idea what kind of work I’d even be doing, with a pretty generic job description of “helping out where needed.”
So, what kept me here? Well, a few things certainly helped: a great boss and coworkers (a trend that fortunately has continued to today!), the ability to grow professionally into a role that suits me best, and a flexible working environment. That last one was especially key when I decided to leave DC after two years in our office and move back home to the Midwest.
But those are all things I could find somewhere else if I wanted to.
What ultimately keeps me here, year after year, are the kids we serve.
Diving into the scope, science and statistics of childhood cancer is an eye-opener for anyone new to this world. But what really generated a personal investment in this cause was meeting families and survivors and hearing their stories.
In the early years of my work with CCCA, I helped put on young adult survivorship conferences around the country, where I was humbled and inspired by my peers who had been through so much more in their young lives than me. One of those survivors I met in my early days with CCCA is now my daughter’s Godfather and a dear friend. With every new family that I meet, I grow more passionate about our mission of creating a future where every child with cancer can live a long and healthy life.
And here’s the most rewarding part of all: what we do is creating that future. Our work is unique in the childhood cancer community because we are almost exclusively focused on policy and advocacy. That means our work is wonky and complex, and the progress we make often feels like it comes at a glacial pace. Legislation typically takes years to advance into law – and even longer to start changing things in the real world. When you’re working with kids who don’t have the luxury of time, that progress can feel agonizingly slow. But – it’s happening.
Here are just a handful of our big policy achievements over the years:
- Passage of the Affordable Care Act, which lifted lifetime caps on coverage, extended care for survivors on their parents’ plans, and secured pre-existing condition protections for our kids. We spoke up as a voice for kids with cancer during healthcare reform discussions – as we continue to do today.
- Protected funding for the National Cancer Institute, by fighting appropriations battles year after year after year. We operate with a fundamental understanding that federal funding is especially critical in childhood cancer, where patient populations are small and unprofitable. Some years, these battles have been particularly tough and the outcomes unfavorable, as we experienced with 2013’s sequestration cuts. But, with children’s lives on the line, we never have and never will stop telling Congress how vital a fully funded NIH is to achieving new therapies and new cures for our kids.
- Passed the RACE for Children Act into law – just this month!! We were involved with the earliest iterations of this legislation, fighting for passage of 2012’s FDA Safety and Innovation Act – and then fighting to improve it ever since. The acronyms BPCA and PREA have been daily lexicon within the Children’s Cause for years, and we now celebrate this hard-fought achievement while looking forward to the work that comes next, where patient advocates are part of the discussion with FDA about what drugs should be developed for kids.
The next big achievement on the horizon – which I hope we can celebrate yet this year – is passage of the Childhood Cancer STAR Act. This bipartisan bill is the most comprehensive legislation ever taken up by Congress and it has the support of over 60% of the U.S. House. The survivorship provisions in this bill are especially exciting to me. Children’s Cause has been advocating for survivorship legislation ever since I can remember, and this bill contains our best survivorship provisions. Its passage would be the culmination of many years’ worth of research, relationship-building and hard work.
Many of these achievements were made possible because of strong and impactful community coalitions. We were founding members of the Alliance for Childhood Cancer and spurred the first Alliance-led Action Days, which is now an annual event bringing 150-200 advocates to DC every spring. In 2013, we helped launch the Coalition Against Childhood Cancer (CAC2), a collaborative coalition whose Board I am proud to currently serve on.
Make no mistake about it: we’ve got a long way to go.
2,500 children still die every year from cancer – 2,500 too many. Survivors – a cohort expected to reach half a million by 2020 – are still burdened with a lifetime of late effects that impact their long-term quality of life. The financial impact of childhood cancer is burying families in debt while they fight for their child’s life.
Five years ago, when I became a new mom, this work took on a deeper level of meaning for me.
When I look at my own children and imagine the unimaginable – one of them becoming one of the 1-in-320 kids who will receive a cancer diagnosis in their childhood – I am propelled to keep fighting.
I fight for a world where every oncologist who must utter the words “your child has cancer” can immediately follow up with “and we have a cure.”