DeSantis announces new legislation and funding for children’s cancer and rare diseases

Florida Gov. Ron DeSantis and his wife Casey on Tuesday announced new funding for adult and children’s cancer and pediatric rare diseases.

The funding is part of the 2024-2025 state budget and represents a record investment in cancer research and innovation for new treatments, they said at a news conference Tuesday at Nicklaus Children’s Hospital in Miami, where the governor signed healthcare bills.

“These national cancer institutes — we have three of them now in Florida — do a great job, but we really believe we need to be diverting even more resources to places like Nicklaus Children’s and other places for pediatric cancer that may not be NCI designated,” the governor said. “The [cancer] innovation fund will be able to do that.”

Overall, the state’s budget will allocate $232 million for cancer initiatives, with $60 million for the Florida Cancer Innovation Fund, a big increase from $20 million provided to the innovation fund in the last budget year, DeSantis said. “That’s important because you have places like Nicklaus Children’s Hospital, support for pediatric cancer research, we can direct money and we will direct money here from that innovation fund,” he said.

Last year, the innovation fund gave money to 30 cancer research programs across the state, DeSantis said.

In addition, the state will give $127.5 million to the Casey DeSantis Cancer Research Program, a big increase from its initial funding of $62 million. The governor said the state wants accountability as part of the additional spending. “We want to see metrics. We want to see results,” he said.  “Not just for taxpayers but also for patients.”

Casey DeSantis, who survived breast cancer, said Florida’s efforts to bolster cancer care started with Florida Cancer Connect to offer patients resources and information. Later, the state added a collaborative, a group of people who brainstorm how to improve cancer care in Florida and produce a report.  Now she wants to see an investment in annual data collection on cancer occurrence rates and reoccurrence. She also wants more data sharing among cancer centers, and innovation without bureaucracy.

Most important, she wants research on the causes of cancer. “What can the people of the state be doing to protect themselves and their families,” she said.

“Today with what the governor is signing into law in this legislation, it really solidifies it … It gives them (the collaborative) the ability to take a deep dive into what’s happening,” she said.

The governor said the state’s budget also allocates $3 million to be spent specifically for pediatric cancer, and $255,000 to support Nicklaus Children’s Hospital in providing specialized care for patients they serve through Medicaid.

Along with a series of additional healthcare-related bills, DeSantis signed one that creates a pediatric rare disease grant program to provide money to applicants to advance research and cures for rare pediatric diseases. The program already has received over 30 applications, he said.

Jack Nicklaus, former professional golfer and benefactor of the Nicklaus Children’s Hospital, also spoke at the news conference. He said he is particularly appreciative of the new state funding for pediatric rare diseases. “Parents should never have to wait for months to receive results of their child’s diagnosis. Governor, we stand with you so no child will ever have to leave our great state of Florida for care.”

Florida Senator Gayle Harrell, sponsor of the state’s new cancer funding bill (SB 7072), said this year the Florida Legislature made strides in signing several healthcare bills, but she considers hers a big victory for children and adults.

“This bill is so, so important. It is putting more money into cancer funding than we have ever done in the history of Florida … This bill is going to put additional dollars into direct research, and accountability into the use of those dollars and how we are spending them,” Harrell said.