WASHINGTON — For the last decade, Hannah Adams has traversed the halls of Congress with one mission: to increase federal investment in childhood cancer research.
The Birmingham grad student is a 16-year pediatric cancer survivor who’s turned a diagnosis into her life’s advocacy work. She spent part of last week in Washington, thanking members of Congress for their recently passed childhood cancer legislation and urging them to keep up the fight for children.
“I think childhood cancer is something that everyone can get behind,” Adams told Alabama Daily News. “It’s not really a partisan issue. It’s our future, it’s our children, and I think that that’s what’s really unique about this issue is that everyone knows someone who’s been impacted by cancer.”
Adams was 5 when she was diagnosed with Stage 3 Nephroblastoma, a form of kidney cancer. She immediately endured chemotherapy, radiation and surgery.
“The most difficult part of it was just seeing part of my childhood taken away, like, my days of swimming with my friends, and playing with dolls with my sister, turned into sitting in a hospital room, and losing my hair, and really wondering why this was happening to me,” she recounted.
After nine months of treatment, she was declared cancer-free and has spent much of her time since then as a “voice for other children currently fighting cancer, but also those who are no longer here.” She’s been traveling to Washington since she was 12, sharing her story and encouraging lawmakers to keep children impacted by cancer at the forefront of their legislative work.
On her most recent visit to the U.S. Capitol, she and advocates from across the country with the Alliance for Childhood Cancer shared their gratitude with members of Congress for getting the Give Kids a Chance Act signed into law in February, which aims to expand access to new treatments for pediatric cancer.
“(It) was a huge win for the community,” Adams told ADN.
After the Trump administration threatened to cut funding for the National Institutes of Health and the National Cancer Institute last year, members of Congress pushed back and increased funding for both agencies that provide critical medical research. Cancer advocates want to make sure that momentum doesn’t stop in this year’s budget negotiations.
“There’s hundreds of subtypes of childhood cancer, and so especially for the super rare ones, it’s important that our federal government is pouring money into that, because kids are our future,” Adams said.
“Childhood cancer is the leading cause of death by disease in children, nationwide. And no family should have to face the answer that there’s no options left for their kid.”
For NIH, the advocates are asking for a $51.3 billion budget for the next fiscal year, which is about a $3 billion increase from this year. For the NCI, they’re asking for $7.9 billion, about a $600 million increase from last year.
Jennifer Berry from Spanish Fort was also making the case for an increased investment in childhood cancer to Alabama lawmakers last week, after she lost her daughter to a progressive soft muscle and connective tissue cancer in 2018.
“She was just like every normal child, like she played volleyball, softball, basketball, all the things,” Berry told ADN. “And then all of a sudden cancer came into our lives.”
Since then, Berry has become an outspoken advocate for research funding after seeing her daughter’s passion for making a difference.
“It was through her because she was so vocal and just wanted everyone to know about childhood cancer and how unfair it was and the lack of funding,” Berry said. “When she passed away on Thanksgiving morning of 2018, we knew immediately what we had to do, and that was to finish carrying out her legacy and all the things that were important to her.”
The volunteers also urged lawmakers to provide at least $35 million for the Childhood Cancer STAR Act, which advances childhood cancer research. They’re also asking Congress for $100 million for the Childhood Cancer Data Initiative, which collects, analyzes and shares data.