Ollie Super has been in and out of cancer treatment since she was diagnosed with neuroblastoma as a child in foster care. Now the 8-year-old, second grader is dealing with it again. His cancer returned late last year.
Ollie’s parents, who adopted him in 2020, tried to sign him up for a clinical trial CAR T-cell therapy — which genetically reprograms a patient’s white blood cells to help fight cancer — at UNC Health in Chapel Hill, North Carolina, an hour and a half drive from his home in Eden.
His mother Brittany Super described it as Ollie’s “last option”.
But in early March, Super recalled, UNC Health’s financial office told them the bad news: The state’s new insurance for children in foster care wasn’t going to pay for the treatment.
In December, Ollie became one of hundreds of thousands of children nationwide enrolled in a special type of public health insurance for those served by the foster care system. That insurance, known as a special managed care plan, is part of Medicaid, the federal-state program that covers health costs for low-income or disabled people.
According to the National Academy for State Health Policy, North Carolina is one of 14 states with such specific foster care plans. The plans vary by state, but each aims to expand coverage for children in the foster care system — and for children who were adopted from it, like Ollie and his siblings.
Still, like other states that struggled when adding such plans, North Carolina families faced barriers to getting care. Thousands of doctors whose services were covered under Medicaid were not included in the special plan — which is expected to cost the state $3.1 billion over four years — when it began on Dec. 1. This left adoptive parents and guardians of adopted children criss-crossing the system to figure out if they would need to find new health care providers or new insurance.
Brittany super gives her daughter pain medication through Ollie’s gastrostomy tube. (Allison Lee Easley for KFF Health News)
When Brittany Super tried to make an appointment for her daughter Ollie’s cancer treatment, she was told North Carolina’s health insurance for adopted children wouldn’t cover it. (Allison Lee Easley for KFF Health News)
In North Carolina, insurance planning barriers have added another layer of complexity to health care issues. The state – like many others – is already coping with uncertainty Medicaid cuts expected in the wake of Congress’s Republican One Big Beautiful Bill Act. The lack of a separate Medicaid funding also pressured care providers to cut reimbursement rates.
Texas, which established its plan 18 years ago, found in recent years Its foster families also had difficulty finding doctors with insurance. In Florida, state researchers reported as early as 2016 that there was Lack of providers accepting its plan.
Illinois plan prompted to investigate by the Centers for Medicare and Medicaid Services over lack of access to care. Research concluded that California’s plan not provided Children with adequate mental health services. Georgia’s access problems have state officials deeply concerned soon pending legislation There were calls to remove children from the plan and put them back on other Medicaid plans.
But such special plans for children in foster care are steadily gaining popularity. He said, in the last five years four states have launched their own schemes Karen Vanlandeghemsenior director of children and family health at the National Academy for State Health Policy, and he said it’s likely even more people will soon adopt them.
Only a few states publish numbers Medicaid policy analysts said this reflects how these programs are performing. So it’s hard to know why they’ve faced rollout problems or whether they’ve improved access to care. This makes plans risky, he said andy schneiderA research professor at the Center for Children and Families at Georgetown University.
“States that are going in this direction are experimenting until they have the data to support it,” Schneider said. “They’re putting all their eggs in one basket, so they need to pay close attention.”
rough rollout
North Carolina’s special insurance plan for foster children has faced problems since its inception.
The state automatically enrolled Oli and about 32,000 others in its special plancalled healthy blue care together. North Carolina officials had said the program would improve health care access for foster children, who often have medically complex needs and move around frequently.
But foster families soon heard that their health care providers wouldn’t take insurance, according to several families who recounted their experiences struggling to get their children’s procedures covered under the plan.
UNC Health, a state-run health system One of the largest care providers in North CarolinaWith approximately 4,400 physicians, Will not sign on to the state’s plan Initially, this is why he told Super that Ollie’s CAR T-cell treatment would not be covered.
After more than two months of dilemma for families, UNC Health finally reached an agreement in mid-March with Blue Cross Blue Shield of North Carolina, which runs the plan.
But some doctors in North Carolina still don’t accept Healthy Blue insurance.
melanie bushInterim deputy secretary of North Carolina’s Medicaid program, his office said pressing healthy blue To expand its network, even if it already has a “sufficient” number of providers. The North Carolina Department of Health and Blue Cross Blue Shield did not respond to KFF Health News questions about how many providers are included in the new insurance.
“We welcome qualified providers who want to join,” said Blue Cross Blue Shield of North Carolina spokeswoman Sarah Lang.
other problems maintained. As thousands of health care records are transferred to a statewide database managed by Healthy Blue, children’s doctors are struggling to track their patients’ medical histories, foster care advocates and pediatricians said. Parents reported problems viewing health records, finding themselves locked out of the online portal. Others couldn’t access prescriptions. Surgery was delayed. Appointments were cancelled.
“Network management is an ongoing process for any plan,” Lang said.
That meant extra red tape and heartache for caregivers of children like Ollie with complex medical needs The aim of the plan was to provide maximum assistance.
Ollie was diagnosed with neuroblastoma at age 2, when Brittany and Jason Super adopted him from foster care. (Britney Super)
Ollie sometimes gets a therapy dog named Sage when she goes for checkups at a hospital in Charlotte, North Carolina. (Britney Super)
To prepare oneself
Cancer has been a part of Ollie’s life since she was 2 years old. She was in the process of being adopted from foster care when she began chemotherapy and radiation treatments, then received two stem cell transplants, Super recalled.
Surgeons placed a temporary tube in a vein near his heart and a feeding tube in his stomach. As treatment progressed, she lost her hair and a thin layer of skin sloughed off, forcing her new family to wear surgical gowns and gloves when they wanted to get close.
“He doesn’t remember much of his life outside of going to doctors and being in the hospital,” Super said.
Ollie still has a port ready in his chest for whenever he needs intravenous medication, and his monthly doctor appointments are scheduled to be weekly. During an emergency room visit in mid-March, doctors told Super that her daughter’s cancer had spread. Ollie will need more chemotherapy before his body is ready for more advanced treatment.
But the super team, which has been stuck in uncertainty for more than two months, is still feeling some relief. They are preparing for a back-and-forth drive for CAR T-cell therapy treatment in Chapel Hill. And they’re grateful, even if it means Ollie will have to spend at least five more weeks in and out of hospital.
Reliable health insurance will be important for Ollie, and Healthy Blue leaders said they are talking to doctors, parents and others to make sure the plan is working. His procedures cost several million dollars, but covering her bills seamlessly allows the family to focus on Ollie’s treatment, his mother said.
“The biggest challenges for him will be in the first few months of the study,” said Super, who knows side effects of the therapy include fever, fatigue and confusion. “But I hope that after that, the CAR T-cells will do their job and fight the cancer and she can continue to live a playful, active life.”
That means, they hope the girl can be at home more often with her five siblings and three family dogs, including Remy, a Border Collie mix and Ollie’s favorite.
Super cherishes those precious moments for her daughter – “being a child and doing things like a child.”
