As if undergoing 23 surgeries wasn't enough, an 11-year-old is also fighting to help other children in danger of losing their medical insurance.
Marina Marasco knows hospitals far better than any preteen should.
"In my first surgery, I was less than an hour old," she said.
Marina was born with a rare birth defect that left all her internal organs protruding from her abdominal cavity and covered by a thin membrane. It's a condition known as a giant omphalocele. Marina often has to teach others how to pronounce it.
"Uhm-Fal-O-Seal," she says.
Those people include U.S. Sen. Marco Rubio of Florida.
Marina and her mom recently went to Washington, D.C., fighting for Medicaid funding for children's health, both for themselves and millions of others.
Marina's 23 surgeries would have bankrupted her family without health care coverage.
"They estimated when she left the NICU at $4 million. She was in the NICU for 10 months. She came home on full life support," said Nikki Marasco, Marina's mother.
With still more surgeries to come, Marina and her family are now part of a group called Speak Now for Kids. It is a grassroots effort to raise more funding for rare childhood conditions and for protecting Medicaid for all children who need it. They want to make it a national priority.
"I hope to open people's eyes," Nikki Marasco said.
Marina knows her lobbying may not get the results she wants right away, but this determined young woman says she won't stop until there are positive changes.
"It's really worth it," the youngster said.
Speak Now for Kids has been active in supporting the ACE Kids Act that was just signed into law
by the president. It improves how care is delivered to children with complex medical conditions on Medicaid.
MARINA'S FIGHT FOR HEALTHCARE COVERAGE
BACKGROUND: From 1990 to 1998, children who were covered by any type of health insurance decreased from 87 to 85 percent. From 1998 to 2000, children who were covered increased to 89 percent, and continued to rise slowly through 2012. From 2012 to 2016, it increased more rapidly, from 91 to 95 percent. Children covered under private health insurance plans decreased from 1987 to 1995, from 74 to 66 percent, then increased to 71 percent by 2000. Since then, however, the rate has increased slightly to 63 percent in 2016. Children covered by public insurance rose fairly consistently from 1987 to 2015, from 19 to 43 percent of all children, but has decreased slightly since then, to 42 percent in 2016. Shifts in federal and state policy (including the introduction of the Children's Health Insurance Program [Notes:CHIP] ) led to major expansions in Medicaid coverage for children over the past 15 years. Today, the largest sources of public health insurance for children are Medicaid and CHIP, which are administered by the states. (Source: https://www.childtrends.org/indicators/health-care-coverage)
MEDICAID VS. CHIP: Both Medicaid and the Children's Health Insurance Program (CHIP) provide healthcare coverage for low-income children. Both programs are jointly funded by federal and state governments and are both run by the states. Federal regulations mandate Medicaid offer specific services to its covered children. This includes Early and Periodic Screening, Diagnosis and Treatment (EPSDT), and comprehensive services which focus on preventive care and wellness. Services also covered by Medicaid include care provided at Federally Qualified Health Centers (FQHCs) as well as rehabilitation services. CHIP programs, however, do not have to meet the standard set by EPSDT, although they must provide benchmark care that includes hospital care, laboratory studies, x-rays, and well-child examinations, including immunizations. (Source: https://www.verywellhealth.com/understanding-the-difference-between-medicaid-and-chip-4137934)
MEDICAID EXPANSION = BETTER CARE: The Affordable Care Act's Medicaid expansion was linked to better access to surgery and higher-quality surgical care, according to a new study from Harvard T.H. Chan School of Public Health. "What was most striking was that we saw significant improvements in the treatment of surgical conditions fairly quickly, less than two years after states expanded Medicaid coverage," said lead author Andrew Loehrer, who conducted the study as a research fellow at Harvard Chan School. The researchers speculated that the ACA's Medicaid expansion led patients with surgical conditions to seek treatment before complications set in. "The fate of the ACA and Medicaid remains a key policy debate," said senior author Benjamin Sommers, associate professor of health policy and economics at Harvard Chan School. "As policymakers continue to discuss major changes to the ACA, our findings provide important new evidence that Medicaid expansion is improving the quality of care for serious conditions affecting tens of thousands of Americans every year." (Source: https://www.hsph.harvard.edu/news/press-releases/medicaid-expansion-surgical-care/)