Just two days into "official" summer, and Nicklas Nelson, of Rosemount, already has an impressive topic for his what-I-did-on-my-summer-vacation essay. The charismatic 10-year-old was in Washington last week, enjoying the sites but, more importantly, reminding members of Congress that children wield influence even if they can't vote.
He was among about 40 children and their families from across the country taking part in the National Association of Children's Hospitals Family Advocacy Day, an effort to keep unique pediatric health care needs front and center at a time when the buzz phrase is Get In Line.
"It was amazing. I loved it, and I know they're listening to me," said Nicklas, who uses phrases such as "parity bill." He was born with a rare syndrome called popliteal pterygium that led to the amputation of both of his legs.
No pity necessary. He says getting his math homework done is more of a challenge -- especially if that math involves trying to figure out how to reform this country's health care monster.
Some scary numbers: Nearly 9 million children in the United States have no health care coverage. Of those who do, about 29 percent nationwide (20 percent in Minnesota) are covered through Medicaid or a state Children's Health Insurance Program (CHIP). This comes as the pool of doctors willing to take Medicaid patients is shrinking and as Minnesota Gov. Tim Pawlenty puts the squeeze on MinnesotaCare, a program offering subsidized health insurance to 86,000 adults and 26,000 children.
Expect more sick children turned away in the doctor's office, or made to wait weeks or months to see a specialist. Other families are turning to already overwhelmed emergency rooms.
Even those lucky enough to have private insurance, such as Nicklas' family, are trying to stay out of the panic room. "I'm scared to death," said Nicklas' mom, Greta, a neonatal nurse. Since birth, Nicklas has had 33 procedures at Gillette Children's Specialty Healthcare and Children Hospitals and Clinics of Minnesota, and he wears prostheses on both legs which must be refitted frequently. Mom remembers one hospital bill, in particular, for $144,000.
"Nicklas said, 'I can have a better life if I get my legs amputated because I can get prosthetics,' but the scary thing is that my husband's employer could switch insurance and they could say, 'No, we don't have prosthetic coverage.' Here he is making the biggest decision of his life, and he needs new legs or he can't function."
She and her husband, Gary, a Minneapolis police sergeant, are also parents of 12-year-old Naomi, a six-year cancer survivor who still faces "the latent effects associated with chemotherapy at such a young age," Greta said. "We would be absolutely devastated if we didn't have insurance. There are some days my brain hurts. It's such a complex issue."
Making it more complex is that Greta describes herself as a "fiscal conservative. Working in the health care system, there is so much waste, it's infuriating."
When Nicklas grew out of his prosthetic socket, Greta persuaded his doctor to reuse the parts for his other leg, which saved about $7,000. "You wouldn't want to be throwing $50,000 computer-operated legs at a small child who will outgrow them in no time," Greta said. "But when you need a leg, you need a leg. I see it from both sides."
In Washington, though, they kept their message streamlined: Reform health care, yes, but not on the backs of children who are not mini-adults. Joining them were Gretchen Piper and Scott Rosenbaum, of Wayzata, who went to Washington with their 7-year-old daughter, Louise, and 5-year-old son, Sam. Louise had brain surgery for epilepsy at Children's two years ago and has been seizure-free since.
Piper said they were "pleasantly surprised by how much our legislators listened, [including Sen. Amy Klobuchar and Reps. Erik Paulsen, Betty McCollum, Tim Walz and John Kline] even if they didn't agree. I definitely felt heard.
"We're certainly not experts," Piper said, "but one way to look at this is I can now go back to work and my child can go back to school and she doesn't need specialized aides. When you take care of a child, that family and that child's entire life are so much better."
"Nick and Naomi are both prime examples of how life can hit you on the backside of the head when you least expect it," Greta said.
"I'd like to think of my kids as success stories of the children's health care system. Nicklas, because of the care he's gotten, has a bright future. Naomi is a survivor.
"Part of addressing children's needs is, if we can take care of them from the start, they have a better chance for a healthy life down the road."
Gail Rosenblum • 612-673-7350 • firstname.lastname@example.org