The Trump regime’s research cuts delayed a promising treatment for a deadly childhood brain cancer by at least a year, according to CNBC
Connecticut has moved dozens of seriously ill children off the waitlist for a Medicaid program that pays for their care at home
Lawmakers reviewed the program’s renewal Tuesday, the result of years of work that began with a Guilford family
Federal research cuts under the Trump regime delayed a promising treatment for a deadly childhood cancer by at least a year, CNBC reported Sept. 25, as Connecticut moved dozens of seriously ill children off a waitlist for care at home.
According to CNBC, 8-year-old John Paul Macri was diagnosed in March 2025 with DIPG, a brainstem tumor that cannot be surgically removed. Roughly 2% of children with the disease survive five years. His family’s hopes rested on an experimental mRNA therapy under development by Eugene Hwang, a brain cancer expert at Children’s National Hospital in Washington, D.C.
In August 2025, the National Cancer Institute told the Pediatric Brain Tumor Consortium, which would have supported the trial, that it could not seek renewed funding, according to consortium chair Ira Dunkel. Hwang told CNBC that loss set the trial back by at least a year. A Department of Health and Human Services spokeswoman said the consortium’s transition had not delayed potential treatments. Dunkel disputed that, telling CNBC two of the consortium’s trials were shut down and four others were closed to new patients for 13 months.
John Paul’s cancer later spread to his spinal fluid, which disqualified him from clinical trials, and his family moved him to hospice care, CNBC reported.
“These decisions have very real consequences,” his mother, Katie Macri, said.
“Families facing the worst diagnosis imaginable deserve a government that races to find cures, not one that dismantles the research that produces them,” said Senate Majority Leader Bob Duff (D-Norwalk). “Connecticut stepped up to keep research going at UConn when Washington pulled the rug out, but no state can replace the NIH. The Trump regime needs to stop treating lifesaving science as something to cut.”
Meanwhile, in Hartford on Tuesday, members of the legislature’s Appropriations and Human Services committees held a public hearing on the state’s request to renew the Katie Beckett waiver. The program lets children with severe disabilities and terminal illnesses who would otherwise need institutional care enroll in Medicaid and receive services at home that private insurance typically does not cover. It serves families who earn too much to qualify for Medicaid, so parents do not have to give up everything they own to get their child care.
The waitlist for the program has historically averaged about six years. Dozens of children have come off it and started receiving services since the start of 2026, according to the Department of Social Services.
The change traces to a 2024 law that created a working group to shrink the waitlist. Its recommendations passed the legislature unanimously in 2025 as Public Act 25-42, streamlining how the state runs the waiver. The state budget added $1 million in fiscal 2026 and $2 million in fiscal 2027 to pay for it.
The push began with a Guilford family. Chloe Negron had juvenile Tay-Sachs disease, a rare and terminal genetic disorder, and her parents, David and Rennie Negron, testified in 2024 that the family faced a wait for services that could outlast their daughter’s life. David Negron later served on the working group. Chloe died in 2025, before the bill passed.
“I urge the legislature to bring Connecticut in line with its neighboring states and help my family and others allow their children to live and pass away with dignity,” the Negrons said in 2024.
“I think about Chloe Negron every time we talk about this program,” said Sen. Christine Cohen, D-Guilford. “Her parents, David and Rennie, turned the hardest thing a family can go through into a fight for other people’s children, and because of them, dozens of Connecticut kids are getting care at home this year instead of waiting. No family should have to choose between their savings and their child’s care. I’m grateful to everyone who worked together to get us here, and we are not done until that waitlist is gone.”
“I think about Chloe Negron every time we talk about this program,” said Sen. Christine Cohen, D-Guilford. “Her parents, David and Rennie, turned the hardest thing a family can go through into a fight for other people’s children, and because of them, dozens of Connecticut kids are getting care at home this year instead of waiting. No family should have to choose between their savings and their child’s care. I’m grateful to everyone who worked together to get us here, and we are not done until that waitlist is gone.”
