‘GoFundMe felt demeaning,’ but Illinoisans are turning to it as a health care lifeline

Born just two weeks ago, Zalina’s tiny hand grips her mother’s finger as if to say “Everything is going to be OK.”

Janna Schnell isn’t allowing herself to think about the impending medical costs of Zalina’s premature birth, or being part of a growing trend that finds financial help in the kindness of strangers via platforms such as GoFundMe.

A $25,000 GoFundMe campaign has been created for Zalina, who was born one month premature with a distended abdomen. Soon after her birth, Zalina was transported from Presence St. Mary’s hospital in Kankakee to the neonatal intensive care unit at University of Chicago’s Comer Children’s Hospital, where doctors performed a surgery to remove a section of her small intestine which had been twisted and was dead inside of her body.

Schnell and Zalina’s father, Juliano Gutierrez, are among countless families who have found themselves turning to the fundraising platform GoFundMe as a health care lifeline.

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“It’s a blessing that all my family and friends are coming together to donate. It was secondary in our minds, thinking about the costs of everything,” said Jillian Schnell, Janna Schnell’s sister, who started Zalina’s campaign. “It was pretty rough, but we did what we had to do.”

Recent reports show that more than a third of all global GoFundMe campaigns sought to raise money to pay for medical expenses. Overall, there are more than 250,000 medical campaigns per year, cumulatively raising an annual average of more than $650 million. Anyone who creates a GoFundMe campaign can choose the “medical” category for various reasons, and the company says it’s impossible to track exactly how the funds are used. Some might use the money raised to cover lost wages for a patient or for a caregiver during an illness.

While GoFundMe does not keep state-by-state data on its campaigns, many underinsured Illinoisans, like Gutierrez and Schnell, have found themselves in unanticipated medical predicaments.

The young parents from Bourbonnais thought they were prepared for the birth of their daughter. But in the midst of Zalina’s procedures, as doctors and nurses were bustling around them, Gutierrez was asked, “Does your baby have insurance?”

Schnell, a 25-year-old restaurant server, is still on her mother’s insurance plan. Gutierrez, a 27-year-old who installs security systems, does not have health insurance because he is a contract worker and makes too much money to qualify for Medicaid. He and Schnell have paid more than $3,000 in deductibles for OB-GYN appointments.

Swimming in a too-big newborn onesie decorated with butterflies, a design to match her bedroom at home, Zalina is intertwined with tubes connected to machines and IV bags. While Schnell’s insurance covered Zalina’s birth, it does not cover the costs associated with the baby’s unforeseen medical condition.

“I’m not even thinking about medical bills right now,” Gutierrez said as he fed his newborn daughter, adding that it seems unfair that Zalina’s mother’s insurance will not cover the child’s medical costs. “I just want my baby girl to come home healthy, but then I know the medical bills will start rolling in.” Zalina won’t be going home for at least six more weeks, and Gutierrez said he expects the costs to be equivalent to a “nice single-family home in the suburbs.”

“Every day on GoFundMe, we see the challenges Americans face with the rising costs of a broken health care system,” the company told the Tribune. “However, while GoFundMe can provide timely, critical help to people facing health care crises, we do not aim to be a substitute social safety net. A crowdfunding platform cannot and should not be a solution to complex, systemic problems that must be solved with meaningful public policy. We believe that affordable access to comprehensive health care is a right, and action must be taken at the local, state and federal levels of government to make this a reality for all Americans.”

Zalina and her parents, who have a pending Medicaid application for their newborn, are not alone.

In 2010, according to the U.S. Census Bureau, 16.3 percent of Americans, or 49.9 million people, were without health insurance. And although that number dropped to 8.6 percent by 2016, there still are more than 27 million people without health insurance.

Neal Zundell, a business analyst and part of a family of six in Chicago’s West Rogers Park neighborhood, never thought he would be in the situation to ask for financial help online. But since 2014, Zundell has raised nearly $120,000 through several GoFundMe campaigns for his son, Izzy, who has leukodystrophy, a rare, degenerative genetic disorder that affects the central nervous system.

“I used to run away from this kind of stuff, I didn’t want to make the calls asking for donations,” Zundell said, adding that at first, using GoFundMe felt demeaning. “But when it came to the life of my own son, all of a sudden I found the tenacity to go out and do that. I realized this was my obligation as his parent.”

Children with Izzy’s condition have a life expectancy of nine to 10 years, because there is no cure for the progressive, irreversible disease. Izzy’s condition gives him the equivalent of “major arthritic pain,” Zundell said.

He said a physical therapy called the Feldenkrais Method helps to alleviate Izzy’s pain and make his life more comfortable, but the costly method is not regulated by the Food and Drug Administration nor covered by insurance.

Zundell’s wife, Chana, does not work because she needs to take care of Izzy 24/7, and the one-income household cannot support the $1,250 per week therapy. The family was recently approved for a nightly nurse through a state-funded program, but Zundell said it feels like they’ve been working through red tape for years with their insurance provider and Medicaid. Their health insurance covered the cost of Izzy’s feeding equipment, but not the Pedialyte formula he needs, which Zundell calculates to be $11,000 per year.

“It’s sad that it has come to this — basically people are raising (money for) their own health care because the health care system is so broken here,” Zundell said. “If health care is paying a nickel for every dollar that you need, technically you have health care, but it is not helpful.”

Every month, the Zundells’ expenses outweigh their income. They cannot invest in a home because of their debts, and Neal still worries how he’ll pay the rent. Like many middle-class families stuck in financial limbo, Zundell makes “too much money” to get government assistance.

“It’s become an epidemic as politicians cannot agree on health care legislation, so the people that are suffering continue to suffer as premiums are raised, but they cover less,” Zundell said. “If Congress’ salary depended on getting a health care bill passed in 2018, I bet they’d somehow find a way to do it. But in the meantime, we’re stuck.”

seadens@chicagotribune.com

Twitter @savannaheadens

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