美国国家公共电台 NPR Her Own Medical Future At Stake, A Child Storms Capitol Hill

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The Republican effort to replace the Affordable 1 Care Act failed in part because of the changes they wanted to make to Medicaid. The proposal would have cut federal spending on the program by a third. Opposition 2 came from all sides. Republican governors, the American Medical Association, not to mention the many lobbyists knocking on the doors of lawmakers on Capitol Hill. NPR's Alison Kodjak spent the day with one Medicaid supporter, an 11-year-old speaking on behalf of the Children's Hospital Association.

SUSIE PITTS: Medicaid is what?

TYMIA MCCULLOUGH: Health insurance.

PITTS: Health insurance that does what?

TYMIA: It pays for you to see the doctor.

ALISON KODJAK, BYLINE 3: Tymia McCollough fidgets in front of a mirror in her hotel room as her mom, Susie Pitts, put the final touches on her hair and nervously 4 drills her on what she's going to say.

PITTS: If you cut or cap Medicaid, there is no...

TYMIA: Guarantee that you will get the consistent care that...

KODJAK: It's a big day for this petite 11-year-old, who's wearing the tiara she won when she was named Miss Pre-Teen South Carolina. She and her family are in Washington, D.C., for the first time, and they're about to meet some members of Congress. Their mission - to convince those lawmakers to say no to cutting Medicaid.

PITTS: She's had two surgeries, 45 blood transfusions 5, over 49 hospitalizations. And Medicaid is what pays it.

KODJAK: That's because Tymia has sickle 6 cell anemia 7, a genetic 8 disease where her red blood cells can't carry oxygen. The episodes can be painful, and the disease can be fatal.

PITTS: This last previous time, it was - she was fine. She was having fun. She was dancing.

TYMIA: And at that point, it started in my left leg, and it was - my leg was swollen 9. And it feels like a knife is just stabbing me out and in.

PITTS: And she'll start screaming, and it's a scream that I wish upon no one to hear.

KODJAK: It's because of these episodes that Tymia is considered disabled, which qualifies her for Medicaid. And her message for the Congressmen...

TYMIA: Medicaid is very special to me, and I want to live for the rest of my life, and...

PITTS: I pray that they understand the importance because it's her life that they are dealing 10 with. I always ask this question. What would you do if it was your child?

KODJAK: Later, Tymia heads to Capitol Hill. She's got a small entourage, including a lobbyist from the Medical University of South Carolina, where she gets her care. By the time they arrive at the Rayburn House Office Building, she's pretty excited.

TYMIA: Sam Rayburn. Hi, Mr. Rayburn.

KODJAK: She heads upstairs to her first meeting with Republican Congressman 11 Mark Sanford. As we approach Sanford's office, a woman walks out.

UNIDENTIFIED WOMAN #1: Oh, are you Miss South Carolina?

TYMIA: Yes, I am.

UNIDENTIFIED WOMAN #1: Oh, my goodness, you look so pretty. I love your crown.

TYMIA: Thank you.

KODJAK: And now it's time to meet the congressman.

PITTS: I'm going to pray before we go in there. Always pray.

UNIDENTIFIED WOMAN #2: So this is the star of the show. This is Mia. Come on in.

KODJAK: Mia sits down on a little couch beside Representative Sanford, and she's off.

TYMIA: I really need Medicaid because it pays for my medical equipment, my checkups, to me to see the doctor and be hospitalized. So please do not cut Medicaid or cap because it's very important to me.

MARK SANFORD: Wow.

KODJAK: Sanford tries to assure Mia he's on her side.

SANFORD: I hear you loud and clear on the Medicaid front. Now, don't make me cry. I'm a little emotional this week. My mom died, and so I'm going to start to cry with you if you start to cry.

KODJAK: Then he talks about spending priorities and budgets. Tymia looks straight ahead. A single tear rolls down her cheek. Her mom, Susie, leans in.

PITTS: What if it was you or if it was your loved one? What would you do?

KODJAK: Sanford assures them that he wants to protect Medicaid for children like Mia. Then he's called away to the House floor.

SANFORD: I mean we just have to get unlucky with our timing 12 here, but when there's a vote, there's a vote. But I want to continue...

UNIDENTIFIED WOMAN #3: Great job.

TYMIA: Thank you.

KODJAK: Mia and her entourage head to the next office. They'll have four meetings this day where they'll hear about reimbursement 13 rates and the proper role of government. By the end, Mia is tired and riding in a wheelchair. Susie, though - she refuses to be intimidated 14 by the politics or the jargon 15. She's geared up for another full day on Capitol Hill.

PITTS: Looking forward to it. I'm ready. I'm ready (laughter).

KODJAK: Alison Kodjak, NPR News, Washington.