The Neals have insurance but still faced tens of thousands of dollars in out-of-pocket expenses.
The school held walkathons and spaghetti dinners and sells “Praying for Cameron” rubber bracelets.
Fundraising has become so integral to the high cost of staying alive that the Cleveland Clinic assesses transplant patients for their ability to fundraise or to work with fundraising organizations.
It’s a trend that’s disturbing to Dr. Walter Edinger, associate professor of medical ethics at the University of Toledo College of Medicine.
“Families will do anything they can to help their loved ones, but it shows a problem in the system that leaves people without the ability to provide for their families,” Edinger said. “Many people would argue that patients are being forced to ask for something that ought to be a right.”
What’s needed, Edinger said, is an honest public discussion of health care needs and priorities: “Asking individual families to do fundraising is attacking the wrong side of the problem. We need an honest social conversation without politics or misrepresentation from both sides, or people saying, ‘I’ve got my health insurance and it’s not my problem.’ ”
The Neals’ ordeal began in April 2010 when Cameron, an athlete and PeeWee football player, started having troubles moving his wrist. His parents suspected a sprained wrist; a CT scan revealed a softball-sized tumor in his brain.
Brain surgery was followed by six weeks of radiation. Cameron’s sunny nature and determined spirit remained the only constants in lives that had been turned upside down. “They sent him home with a walker, but he refused the walker and walked on his own,” his father, Jason, recalled. “He takes it like a champ — he’s the happiest kid I’ve ever seen.”
Even Cameron admitted to feeling sad, however, when another tumor, close to the optical nerve, was discovered in April. A second successful brain surgery was performed at Dayton Children’s Medical Center on May 2.
“I don’t see him as being sick; I see him as healing now,” his father said. “But it’s not fair that he can’t run around and play sports like he used to.”
Shawnalee is only 23 but doesn’t envy her friends’ more carefree lifestyle or their freedom to indulge in a girls night out. She is Cameron’s stepmother, but “that’s my baby,” she said. “I love my life just the way it is. I wouldn’t trade anything for these kids. I truly believe I was put here on earth to take care of them.” Cameron has two brothers, Jordan, 13, and Jason, 4, and a 9-month-old baby sister, Tiara.
She would like to get a job to help support the family, but it wouldn’t be possible with Cameron’s almost daily doctor appointments. “I don’t think I could have found anybody else who would be so supportive,” Jason said. “She tackled it; she ran toward it. I feel guilty, with all the stuff she does, but she reassures me she wouldn’t want it any other way.”
Jason works for Mullins Rubber Products, making suspensions for semi trucks, and doesn’t dare take a sick day or a day off. “I need surgery for tendonitis, but what am I supposed to do?” Jason asked. “If I weren’t working, we’d be bad off.”
The Make-A-Wish Foundation sent the family on an all-expenses-paid, weeklong trip to Disney World in December 2010. Normally, Jason said, “We budget every penny. You just pull together and stay strong and you get through it, you get closer.”
St. Helen School has been more than happy to step up to help the family.
“Cameron is the sweetest kid in the world,” Principal Barb Markus said.
At a recent spaghetti dinner, many families donated money even if they had other plans that night. The school’s technical staff set Cameron up with a laptop computer with a camera so he could Skype with his classmates. “He was still very much a part of his class,” Markus said. “This is a wonderful faith community and the response was just incredible.”
Renee George, vice president of revenue cycle for Miami Valley Hospital, said that many families like the Neals are facing significant out-of-pocket expenses. “Some of the health care policies are evolving so patients are responsible for more of the expenses than in years past,” George said, “and folks are getting creative in how they cover it. Most hospitals have financial assistance programs that can help patients who have insurance with out-of-pocket deductibles as high as $5,000 to $10,000.”
George said patients are never asked whether they are willing to engage in fundraising. Patients are screened for their eligibility for third-party coverage such as Medicaid or state-funded assistance programs. “We offer payment plans for people who may not be able to pay right now but have the ability to pay over time,” George said.
Similarly, at Kettering Health Network, financial counselors work with patients and their families on payment options, but “as a hospital system we do not coordinate individual patient fundraising,” said spokeswoman Elizabeth Long. “But many of our employees personally participate in fundraising for critically ill patients as members of their community or places of worship.”
Beth Hyland, a social worker at the Cleveland Clinic, said patients are encouraged to work with nonprofit fundraising organizations such as HelpHOPELive, which helps with all catastrophic illnesses, the National Foundation for Transplants and the Children’s Organ Transplant Association for cystic fibrosis patients.
“My experience both professionally and personally is that folks do fundraisers informally — golf outings, dinners, auctions — to help raise money for these catastrophic events that are life-changing and will certainly impact a person’s short-term and long-term finances,” Hyland said. “I have gone to plenty of these and have encouraged people to do same.”
Despite some highly publicized cases of fundraising fraud, Hyland said such deception is a rarity. “When people have the funds at a bank, it is usually a safe bet it is legitimate. But I would always ask what are the funds to be used for and who you can talk to if you have concerns. Donors have the right to know what their funds are to be used for and can possibly direct funds for a particular reason.”
The Cameron Neal Foundation has been established at local PNC bank branches to cover Cameron’s medical expenses and to deposit individual donations as well as proceeds from fundraisers. “We are tremendously grateful,” Shawnalee said.
It’s reassuring to know they can count on their church and community when there’s so much uncertainty. The Neals are not sure, for instance, about the meaning of the $2.2 million lifetime limit for their Anthem/Blue Cross coverage. “If we pass the $2 million mark, does that mean they never cover anything again?” Jason asked. “Even if you were a millionaire, you’d be broke.”
At first, Jason admitted, he was embarrassed to ask for help or to accept donations for his son. “But we figured out on our own that this is something we had to do for Cameron.”
Contact this reporter at (937) 225-2209 or mmccarty @DaytonDailyNews.com.
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