(Iowa Capital Dispatch) Legislation to fund pediatric cancer research passed unanimously out of an Iowa House subcommittee Thursday after lawmakers heard from families whose children have undergone treatments for cancers like leukemia and osteosarcoma.
House File 2057 would establish a standing funding stream to the Iowa Board of Regents for pediatric cancer research at the University of Iowa and University of Iowa Hospitals and Clinics, measured at $1 per Iowa resident but not to exceed $3 million.
Funds would be barred from use for administrative or other unrelated costs, the bill stated, and the board would be required to submit an annual report on how money was used.
Rep. Jeff Shipley, R-Fairfield, chaired the subcommittee, joined by Rep. Timi Brown-Powers, D-Waterloo, and Rep. Heather Hora, R-Washington.
“It’s, I mean, beyond tragic what children are going through,” Shipley said. “And so it’s certainly something that the state of Iowa needs to be paying attention to, and we just welcome the opportunity to hopefully help.”
Iowa Gov. Kim Reynolds headed efforts during last year’s legislative session to allocate $1 million to the UI for study of the factors impacting Iowa’s high and growing cancer rates.
Scott Kaas said during the subcommittee he and others have been asking lawmakers to write bills putting funding toward pediatric cancer treatments for the past two years. He said this feels like the first year they “have a voice in this building” in working with Rep. Jason Gearhart, R-Strawberry Point, who filed the bill, and co-sponsor Rep. Eddie Andrews, R-Johnston.
Devyn, Kaas’s daughter, was diagnosed with acute myeloid leukemia in 2023 at just seven months old, he said, and went through five rounds of chemotherapy in six months, after which she went septic and nearly died.
There is a 65% survival rate “to make it to five years” for acute myeloid leukemia, Kaas said, meaning his daughter has a 65% chance of making it to 6 years old.
“The therapy that she received was created for adults decades ago, it was just reduced in the amount of the drugs — the poison, if you will — for the size of her body,” Kaas said.
Michelle Foth, who also spoke in favor of the legislation, said during the meeting her daughter, Ava, was treated at Stead Family Children’s Hospital after receiving an osteosarcoma diagnosis in 2022 when she was in 8th grade. Ava was diagnosed with myelodysplastic syndrome after her treatment concluded, as it was born from the treatment itself.
She received a bone marrow transplant in May and “is doing well today,” Foth said, but she came to speak for more than just her own family. Everyone knows someone who’s had cancer, she said, and it’s wonderful that there is so much research for adult cancers, but there needs to be more support for researching pediatric cancers.
“It was kind of stunning to me to think that, like if I were diagnosed, that there was more research to help me than there was for our daughter,” Foth said.
How the research would be funded in the legislation is modeled off of the state of Nebraska, Kaas said, which has been funding pediatric cancer research at the University of Nebraska for a decade. That funding started at $1 per Nebraskan but has grown over the years, with federal funding coming in as well, and Kaas said the department handling the research at the University of Nebraska has grown from 18 to 185 people.
Nebraska is doing the right thing, Kaas said, and if this funding doesn’t go through, the University of Iowa would be falling behind the institution to the west. Kaas said Dr. David Gordon, division director of pediatrics-hematology and oncology at Stead Family Children’s Hospital, told him he could spend $3 million “the day they give it to (him)” on things like leukemia-resistant drugs for kids whose healthy cells are being killed during treatment instead of cancer cells.
Jennifer Harbison, chief health care executive for the Iowa Board of Regents, said the board is monitoring the legislation but is in no way opposed to it — the usual process for “supportive appropriations” like this goes through the governor’s office. Reynolds is supporting funding for different cancer and health care access programs, she said, including federal Rural Health Transformation program funding for the state’s “Healthy Hometowns” initiative.
American Cancer Society Cancer Action Network lobbyist Jackie Cale expressed the organization’s support for the legislation, saying “there’s a clear relationship between meaningful investments in cancer research and then reduced mortality rates in the United States.” She added that it’s good the funds are going to the University of Iowa, as its cancer center is a National Cancer Institute designated center and thus meets rigorous standards for research.
“Your vote will be strengthening innovation, strengthening our medical workforce, fueling economic growth in the state, but most importantly, will be helping to reduce and prevent cancer in Iowa and across the country,” Cale said.
Each of the subcommittee’s members signaled their support for the bill and for greater support for cancer research in the state, thanking the families who came in to tell their stories. Shipley said there has been much research over the years, but there is still a lot more work to do.
The bill moves next to the House Higher Education Committee, with Shipley adding it will need to make its way through the appropriations committee before heading to the House floor for debate.
“It would be fantastic if Iowa could lead in research rather than lead in incidents of cancer,” Brown-Powers said. “So I think this is an opportunity for us to maybe change the direction of where Iowa is going.”
