Dublin 6-year-old weighs in on DC’s health care battle

Lobbyists for the health care bill are everywhere on Capitol Hill these days.

On Wednesday, one of the littlest lobbyists — 6-year-old Noble Lett of Dublin — had his say.

Noble, a first-grader at Olde Sawmill Elementary School, was born with Prader–Willi Syndrome, a genetic disorder that can cause a host of medical and developmental issues. But because he was diagnosed on his third day of life, and because the family has been able to have continual access to care at Nationwide Children’s Hospital, he looks to live a fairly typical 6–year-old’s life.

Including one that includes impatience with grownups and their boring conversations.

After meeting with representatives for Sen. Rob Portman, R–Ohio, with Sen. Sherrod Brown, D–Ohio, and with Rep. Bill Johnson, R–Marietta, Noble had had it. Visibly tired, he was ready to go back to the hotel.

No one, after all, said that hanging out with lawmakers was easy.

It was a typical reaction for a kid whose beginnings were anything but.

When Noble was born, he wouldn’t eat. Even though he was carried full term, doctors became concerned when he wouldn’t take a bottle. They ran blood tests to determine he had a genetic disorder that could cause problems ranging from speech delays to physical delays.

Thanks to the federal Children’s Health Insurance Program, his mother said, the family is able to afford the $26,000 to $30,000 in additional costs his therapy requires each year. That price tag is in addition to basic insurance costs.

In Ohio, the state administers Children’s Health Insurance and Medicaid together. Because of this, Crystal Lett, Noble’s mother, worries that a new health-care bill could cut benefits.

“If we didn’t have CHIP, I don’t know how we would meet his needs,” she said, using the acronym for the program, which is due to be reauthorized.

She said her employer-based insurance would cover 12 therapy visits a year. Noble needs around 150.

The coverage has also meant that Noble can avoid long term some of the problems his genetic condition causes; the therapy, she said, is preventative.

Crystal Lett said she’s also worried about proposals to allow states to accept block grants for Medicaid.

A bill that passed the House in May capped Medicaid funding, which covers some 30 million children. She worries that as the state tries to deal with the new law, Children’s Health Insurance will be lumped together Medicaid. There are, she said, too many unknowns.

“For us, it’s the difference between being middle class or not, keeping our house or not,” she said.

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