By:  Caitlin Byrd
Source: The post and Courier

11-year-old from South Carolina lobbies for Medicaid on Capitol Hill

Tymia McCullough showed up on the steps of the U.S. Capitol on Wednesday morning wearing her Miss South Carolina pre-teen tiara and sash.

The crown gives her superpowers, she said. Having her mom speak first, though, gives her courage.

The 11-year-old from Georgetown went to Washington this week to do what many people far older than her have done: Lobby Congress.

Between meetings with South Carolina lawmakers, Tymia turned to her mother.

"Mom," she asked, "if I keep talking to all these congressmen, can I help stop this bill? Can we save Medicaid?"

"Yes," mom Susie Pitts replied. "Your words have power. Speak from your heart and allow your words to flow."

In two days' time, Tymia had spoken with the entire South Carolina delegation about something she lives with every day: sickle-cell disease, a genetic blood disorder that causes debilitating episodes of intense pain.

Tymia said she is concerned about what will happen to Medicaid under the Senate's Better Care Reconciliation Act, the latest health care plan put forth by Republicans.

"If it does pass," Tymia said of the proposed bill, "there’s no guarantee that I will see my future."

As one of the more than 660,000 children in South Carolina enrolled in Medicaid, Tymia depends on the federal source for care. Pitts said her daughter's disease means frequent visits to the Medical University of South Carolina Children's Hospital.

To date, Tymia has been hospitalized 49 times, received 45 blood transfusions and had two surgeries to help save her life.

"Medicaid is what makes her alive today. Without Medicaid she would not be here," Pitts said, choking up on the phone.

Tymia said she is worried about other children like her who are sick and cannot afford care. That's why she said yes when MUSC asked her to join patients and families from children’s hospital nationwide this week to advocate on behalf of children's health.

The first lawmaker she met with Wednesday was 1st District U.S. Rep. Mark Sanford, R-Mount Pleasant. 

"He was nice," Tymia said. "His mom actually just passed away and he felt sympathy for us, and I feel like he understood the sympathy for Medicaid."

The more Tymia spoke to lawmakers, the more comfortable she got in speaking her mind.

"They're just not understanding," she said by phone. "There's no guarantee that kids will get the care that they need if the states get to choose what happens."

At least one lawmaker said he was listening. U.S. Sen. Lindsey Graham posted a photo of him smiling alongside Tymia to his Instagram account. 

"We talked a lot about Medicaid," Graham, R-S.C., wrote in the caption. "We have to get this right for Tymia."