NPR

Her Own Medical Future At Stake, A Child Storms Capitol Hill

The Republican health care bill failed in part because of opposition to shrinking Medicaid. An 11-year-old girl with sickle cell anemia went to Washington, D.C., to make sure that wouldn't happen.
Republican Rep. Mark Sanford listens intently as McCullough advocates for the importance of Medicaid to many kids with expensive chronic illnesses.

Tymia McCullough fidgets in front of a mirror in her hotel room as her mom, Susie Pitts, puts the final touches on her hair and nervously drills her on what she's going to say when she gets to Capitol Hill.

"And this is where you let them know that Medicaid is what?" Pitts asks.

"Health assurance," McCullough responds.

"Health insurance that does what?"

"It pays for the need to see your doctor," McCullough says.

McCullough is just 11 years old. She came to Washington last week to lobby Congress over health care. Her family saw it as a life-or-death fight.

That's because McCullough has — a genetic condition that leads to

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