(WIS) - A South Carolina man, with ties to the Midlands, is on Capitol Hill today to take part in a senate health subcommittee hearing centered on changing the way we fight pediatric cancer in the U.S.
Brandon Arrieta's son Alex, 10, passed away from Acute Myeloid Leukemia back in April of 2016.
Since then, the Arrieta family, who live in Hilton Head and have family in Columbia, have carried on his legacy through Alex's nonprofit Lambs for Life. The effort was started by Alex before he passed to encourage other kids with cancer.
It was through that effort that Brandon eventually got the attention of lawmakers about the lack of funding and research for pediatric cancer.
Currently, only 4% of all cancer funding through the National Cancer Institute (NCI) goes to childhood cancer and a pediatric division does not exist.
"When you look at the drug issues and the funding issues, so much of the rationale for why that happens is that there's simply not that many kids with cancer compared to adults with cancer," Arrieta said. "Right now, we're at historic lows as kids don't represent 24% of our population anyway. Yet, cancer kills more kids than any other disease combined."
With the help of Senator Lindsey Graham's office, Arrieta garnered enough support to require a committee report from NCI about pediatric cancer on this year's US spending bill, which was signed into law back in March.
The hearing on that report before the senate health subcommittee is Thursday, May 17.
"What we're really trying to do is get a handle on what exactly happens over there, and what can Congress do to help NCI," Arrieta said. "Right now our feeling is that a pediatric division of NCI needs to be created, but we need NCI to help us with that. So the report in the testimony is going to give us an idea of what their thoughts are on how to achieve that."
Brandon says the recent bipartisan support for a separate pediatric division of NCI has been overwhelming. He believes that we've gone this long without more funding for childhood cancer research simply because lawmakers were unaware of what was happening.
"I can't begrudge anyone for not knowing," added Arrieta. "I wasn't aware of all these issues until Alex' cancer relapsed... so not until Alex had cancer for a second time were we directly touched with the knowledge and the dysfunction."
Arrieta says while he knows change will take some time, he believes this is a huge step in the right direction to change the way we fund and fight pediatric cancer nationwide.
"So much of it is a situation that we can affect," Arrieta said. "This legislation isn't going to suddenly provide a cure. It's not going to suddenly provide new drugs, but it's going to create an environment where proper funding and proper drug development can finally occur."