Nikki Marasco spent 10 months inside the neonatal intensive care unit at Johns Hopkins All Children's Hospital in St. Petersburg after her daughter, Marina, was born 11 years ago. For three years, Marina was on life support. She had 23 surgeries, 21 of those performed before she was 6 years old. And the care was not cheap. "She's been in and out of the hospital the majority of her life," Marasco said of her only child, who suffered from omphalocele, a condition that caused her to be born with her abdominal organs outside of her body. "By the time she left (intensive care), the bill was $4 million. No one could afford that."
Marasco, who lives in Seminole, applied for Medicaid to help with the burden. She was denied three times before the state finally accepted that her daughter qualified as the medically needy.
While her story has a happy ending, it also shows how difficult it can be for families to secure health insurance — and how, according to a new report, it continues to be a struggle.
The report, released early today by the Georgetown University Center for Children and Families, found that Florida, after years of marking declines in the number of children without health insurance, is suddenly seeing a rise.
It's part of a national trend, with the number of uninsured children in the U.S. increasing last year for the first time in a decade. But Florida is one of the outliers, one of nine states that showed the largest upticks of children in that category.
And researchers fear those numbers will continue to rise in the years to come.
"This rate increased during a time of economic strength," said Joan Alker, executive director of the Georgetown center, who predicted continued increases at least through 2018.
"You'd like to think that the rate would go down as more employer-based insurance plans are available during a time of low unemployment," she said. But she added that confusion over the future of the Affordable Care Act, plus a decrease in funding for the law, has contributed to the rise in uninsured children.
Among the other reasons for the increase, experts say, is the refusal by some states, including Florida, to expand Medicaid coverage to parents and other low-income adults.
Three-quarters of the children who lost health insurance from 2016 to 2017 live in those states, which saw uninsured-child rates that were almost triple those in states that expanded the program, the Georgetown report showed.
In Florida, the number of uninsured children increased from 288,000 in 2016 to 325,000 last year, a rise of 13 percent.
Still, that's better than it was at the start of the Great Recession, when 734,000 Florida children had no health insurance.
"From 2008 to 2016, the state did a lot of work to dramatically reduce the uninsured rate. At the time, it dropped by almost 11 percentage points. So it's disturbing to see this on the rise," said Anne Swerlick, an attorney and analyst with the Florida Policy Institute in Tallahassee.
"We'd already heard that, generally, there was an uptick in the uninsured rate for adults as well in Florida. That certainly impacts children. If parents have coverage, their children are more likely to have coverage."
Florida offers health insurance programs for children through Florida KidCare, which is a network of several programs: Medicaid for children, Medikids, Florida Healthy Kids and Children's Medical Services.
These managed care plans are funded federally and by the state through the Title XXI Children's Health Insurance Program, known as CHIP, and Medicaid. They are overseen by various state agencies, ranging from the Agency of Health Care Administration to the Florida Department of Health. The programs allow families to pay a reduced monthly premium, depending on income.
"It's a mess," said Sam Bell, a former Democratic state representative from Ormond Beach, who sits on the board of directors for the foster care nonprofit, the Children's Home Society of Florida.
"The problem is I don't see the new Legislature having any real interest in the subject," Bell said. "There's no real hope that they will be any better than the last administration in being concerned about this. Advocates are not listened to."
Earlier this year, Gov. Rick Scott submitted a request to the federal government to shorten the amount of time people had to apply for Medicaid coverage, which his administration estimated would save $98 million in costs associated with the change.
RELATED: Rick Scott's Medicaid numbers come under fire Bell and Swerlick agree that expanding Medicaid would be an important next step to lowering the uninsured rate.
"There's been a general decrease in Medicaid enrollment in Florida overall, which maybe can be attributed to the improving economy. But that doesn't make up for the loss of coverage," Swerlick said. "Medicaid expansion would be a huge step forward for many parents and their kids."
What also would help is putting a stop to the "uncertainty around health care at the federal level," Swerlick said.
"There needs to be more of an effort to get the word out that these benefits still exist," she said, referring to Medicaid, CHIP and even Obamacare. "Children have excellent coverage under the program, more generous at this point than for adults. People just don't know it exists."
Alker, of the Georgetown center, agreed that the confusion could have caused some families not to re-enroll in Obamacare. That trend is likely to continue, she said, as there is no longer a penalty for not signing up for health insurance.
She added that federal proposals that are "hostile toward immigrant families" are deterring others from signing up for care. The Georgetown report found that a quarter of children living in the U.S. have a family member who is an immigrant, she said.
Marasco, the Seminole mom, said she couldn't imagine having to care for her daughter without the support of Medicaid.
Marina was on a ventilator at home. She had a feeding tube for years. The equipment she needed at home cost $5,000 a month, Marasco said.
"You can't put a price on life," she said. "If they cut Medicaid funding, that means families like us can't get the help they need.
"Marina wouldn't be the healthy 11-year-old she is today — going to middle school like her friends her age — without the medical and financial help we got. It helped her get to the point where she no longer needs that kind of support."
Contact Justine Griffin at email@example.com or (727) 893-8467. Follow @SunBizGriffin.