This morning, 12-year-old brain tumor survivor Charles Robert testified in front of the U.S. Senate Finance Committee and urged committee members to support the Accelerating Kids’ Access to Care Act (S.2372 / H.R.4758; also known as AKACA). The text of Charlie’s testimony can be found below.
Introduced in July by U.S. Senators Michael Bennet (D-Colo.) and Chuck Grassley (R-Iowa) and U.S. Representatives Lori Trahan (D-Mass.) and Mariannette Miller-Meeks (R-Iowa), this bipartisan, bicameral bill aims to eliminate potential delays in treatment for critically ill children who are on Medicaid and need to cross state lines for treatment.
As a pediatric brain tumor survivor who has had to seek specialized care in multiple states, Charlie felt compelled to speak out about the bill when he learned how it would benefit other families traveling for care. The Pediatric Brain Tumor Foundation was honored when his family reached out to us about Charlie’s wish to testify to Congress, and we are grateful to Senator Debbie Stabenow of Michigan and Senator Grassley for working with us to make this happen.
Charlie is an incredible young man, who cares deeply about trying to help other kids with cancer. We enthusiastically join him in urging both the Senate and the House to pass this critical legislation as quickly as possible and make kids with cancer a national health priority.
If you’re interested in joining Charlie in advocating for children with brain cancer, sign up to receive future advocacy alerts at curethekids.org/advocate. Together, we can educate policymakers and the public about the most urgent issues facing families today.
Charles Robert’s testimony to the U.S. Senate Finance Committee, delivered on Thursday, Sept. 28, 2023:
Hi, my name is Charlie and I’m a 12-year-old brain tumor survivor.
I want to urge you to protect the health of childhood cancer patients by co-sponsoring and supporting the Accelerating Kids’ Access to Care Act, or AKACA.
When I was 8, I was diagnosed with a type of brain tumor called a JPA, and I immediately had brain surgery at Riley Hospital. I had to relearn how to walk and use the whole right side of my body again because of the extremely invasive surgery’s effects.
Then I had chemo at CS Mott Children’s Hospital for 60 weeks for 5+ hours, once a week. I had to change my chemo medicine halfway through because I had a serious medical reaction to it.
Every week for more than a year, I would come home feeling very sick for usually 2-3 days and still had hard after-effects on the rest of the days in the week.
Just when I was starting to feel better, I had to go to the hospital to get chemotherapy again.
After both the surgery and chemo, my dealings with the brain tumor weren’t done, and, still, I have effects from the tumor, including trouble with controlling the whole right side of my body and serious hearing loss on my right side.
The only reason I can even stand now is because of many hours a day of physical therapy and occupational therapy for multiple years. I had to throw a ball, do planks for not even five seconds, pick things up, etc., for hours, just to run without falling.
Even with all this, my tumor is the mildest form that you can get. Brain tumors have the highest death percentage of any pediatric disease.
About a year after I ended chemo, I joined an advocacy call my mom was doing and learned about AKACA. I decided I wanted to follow this bill and see it passed. I felt like this was something I needed to do, especially because there aren’t many brain tumor survivors who have recovered as much as I have.
I started with a few meetings and worked up from there. After 18 months of that, I was able to get a chance to speak in front of you. AKACA is one of Senator Grassley’s bills that lets patients use government-funded secondary insurance programs like Medicaid across state lines. Senator Grassley has been a great help with this bill and other related childhood medical acts.
This bill would be important because many patients with cancer and more aren’t getting the care they need, and a lot of them are dying of curable diseases.
While it is true that through an extensive process, a patient can be cleared to get care in another state, patients usually don’t get approved. But even if they do, life-threatening illnesses can’t wait a year or longer for approval. Even a month without treatment can mean never walking again, and not much longer than that can cause death.
I discovered just last week that I need another brain surgery done, and the best place to do it would be at Dana-Farber Cancer Institute in Boston. This surgery may cause a major problem since Dana-Farber is out of state.
I need this bill passed soon. Within two months. This would be a more effective act in saving lives in the pediatric severe disease community than anything else.
To summarize, kids are dying for no reason at all. There is no reason to oppose saving countless lives. If you have any other questions about the specifics of the bill, you can talk with Senator Grassley or Senator Bennet.
One more thing, I would like to thank Mike Henry from the Pediatric Brain Tumor Foundation, Senator Stabenow, Anne Stanski, Amy Brown, Senator Grassley, Nick Potttebaum, and Garret Arbuckle for letting me be able to have this opportunity to share with you. I would also like to thank Make-A-Wish for helping make this a great trip to Washington D.C.
The Accelerating Kids’ Access to Care Act, passed the U.S. House of Representatives on September 17 to improve children’s access to essential health care, while eliminating administrative burdens for providers and states.
“This report lays groundwork to improve the experience of people living with this disease,” said Dr. Sanjay Gupta, CNN’s chief medical correspondent, one of the country’s leading neurosurgeons, and a member of PBTF’s Board of Directors. “I believe it shines a much-needed spotlight on the wide-ranging and extensive challenges that this type of tumor causes for patients and their families, and I am hopeful that this moment is a significant milestone for this community.”
