Since she was born, 11-year-old Tymia McCullough has received 45 blood transfusions and has been hospitalized 49 times, mostly at the Medical University of South Carolina Children's Hospital.
Tymia was diagnosed in the womb with a form of sickle cell disease. The genetic blood disorder triggers debilitating episodes of intense pain. Sometimes it hurts so much, Tymia said, it feels like she's being stabbed with sharp knives from the inside out.
"Anything can trigger her sickle cell crisis," said her mom, Susie Pitts, of Georgetown.
It's difficult to predict when another painful crisis will send Tymia back to MUSC, but it usually happens once a month. Her family is able to afford her expensive care only because Tymia is one of more than 660,000 children in South Carolina enrolled in Medicaid.
If the Senate’s Better Care Reconciliation Act of 2017 becomes law, the bill would usher in almost $800 billion in Medicaid cuts over the next decade.
A new analysis by Avalere estimates that federal Medicaid spending in South Carolina would drop 8 percent over the next decade if the bill becomes law and the state would lose $1.6 billion between 2020 and 2026. Meanwhile, the Congressional Budget Office's score indicates 305,300 Medicaid beneficiaries in South Carolina would lose their coverage and that by 2036, federal Medicaid spending across the country would drop by 35 percent.
Those cuts would force states to make tough choices, such as scaling back benefits or creating waiting lists for children to enroll, said Jim Kaufman, vice president of public policy for the national Children's Hospital Association.
"We don’t think that’s the right thing," Kaufman said. "I think it’s a bad bill for kids."
But Kaufman acknowledged that Medicaid is expensive, usually the largest or second-largest item in a state budget. Most Republicans agree that the open-ended spending must be curbed. In South Carolina alone, Medicaid covers more than 1 million people and costs more than $7 billion a year to administer. The federal government picks up 71 percent of those costs in South Carolina.
"Reforming Medicare and Medicaid is a reality," U.S. Sen. Lindsey Graham, R-S.C., said last week. "Slowing the growth rate down is as humane a way to do it as I know."
'Understand the impact'
Republican leaders in the U.S. Senate intended to vote on the Better Care Reconciliation Act last week before their July Fourth recess, but Senate Majority Leader Mitch McConnell, R-Ky., decided to delay the vote after it became clear too many Republicans would vote against it. If three Republican senators join the Democrats in opposing the legislation, it will ultimately fail.
Neither Graham nor U.S. Sen. Tim Scott, R-S.C., has announced how they will vote on the plan to repeal and replace the Affordable Care Act, but Scott recently said he was "close to 'yes,' " and Graham said last week, "I'm not gonna be the guy to take the bill down."
Both politicians said their constituents have expressed confusion about the plan.
Dr. Sherron Jackson, the director of the pediatric sickle cell clinic at MUSC, said she's "not sure all the politicians and congressmen, senators understand the impact" of the proposed Medicaid cuts.
Three-quarters of her 600 patients, including Tymia, depend on Medicaid for health insurance. Most of them qualify for a policy until they turn 19, when their coverage is typically revoked. The proposed spending cuts would further undermine her patients' ability to "grow up and be productive citizens," Jackson said.
"How are we going to provide the care that they need and deserve?" she said. "Their quality of life and the ability to be functional ... all rests on how we take care of these children when they’re young, when they’re growing."
'How we survive'
Brittan Gotbeter and her husband are raising five children West of the Ashley in Charleston. Normally their income would be considered too high for the family to receive Medicaid, but three of her children qualify for a special eligibility category that provides coverage to patients with very expensive, complex medical conditions.
Two of her children, adopted from China, suffer from spina bifida. Another was diagnosed last year with a rare condition called glycogen storage disease, which requires her to use a feeding tube.
"People say all the time, 'How can you care for these children?' It’s because of Medicaid," Gotbeter said. "For kids with disabilities, it’s key. It’s how we survive. It’s how we feed our family. It’s how we pay our mortgage."
Gotbeter acknowledged the health care system isn't perfect. And she “doesn’t know what the answer is." Her family pays an extra $200 a week for private health insurance because Medicaid doesn’t cover all their expenses. She insisted they would be in financial ruin without the entitlement program.
"I think that it’s very easy for these senators, if you’re not directly affected by something, it’s hard to understand how impactful it is for a family," she said. "Because this is something we use every single day of our life, I know how important it is to us."
Charlotte Edwards now works as a nurse at MUSC, but when her son Legare was born 15 weeks early, both Charlotte and her husband were self-employed.
Legare was so small and sick at birth that he spent months in the neonatal intensive care unit. He also qualified for Medicaid coverage because of his complex medical needs.
"It helped us tremendously. One day, I came home and we had a $450,000 bill and that wasn’t even halfway through our stay," said Edwards, who lives West of the Ashley. "When we lost Medicaid after a year because my son was doing better, our health insurance premiums were $2,200 a month with a $10,000 deductible per person. We almost went bankrupt. It crippled us."
Legare is 10 years old now, healthy and happy, Edwards said. But she remembers how overwhelming his first year was. After he was discharged from the hospital, Legare needed specialty formula that cost almost $800 a month. Because he qualified for Medicaid he also received benefits through the federal Women, Infants and Children program, which covered the cost of the formula.
"That saved us," Edwards said. "I think people don’t realize how important it is for families with children who have severe medical issues."
'If it was you?'
Former S.C. Medicaid Director Christian Soura, who recently resigned to work for the state Hospital Association, explained that the Senate bill was written to shield disabled children from these proposed Medicaid cuts but that the legislation doesn't clearly define which children would qualify as "disabled." He foresees that distinction creating a "legal and operational nightmare."
"It’s impossible to believe that states can absorb cuts this deep and have anybody be unaffected," said Soura, a former member of Gov. Nikki Haley's Cabinet. "Even if you try to protect disabled kids from these cuts, there is no way to do that when you take this much money out."
If the Senate bill is passed, he agreed that states will have to make difficult choices to balance their budgets. That could threaten funding for other important line items, such as education or law enforcement, he said.
Susie Pitts is also worried that Tymia's Medicaid eligibility could be jeopardized. So she watches the news and she prays.
Mother and daughter will travel to Washington, D.C., later this month with an advocate from MUSC Children's Hospital to talk to lawmakers in Congress about the importance of the program.
"Without Medicaid, she would not be here," Pitts said of Tymia. "What would you do if it was your child? If it was you?"
The road they've traveled hasn't been easy. Tymia's frequent hospitalizations make it difficult for Pitts to hold down a job. But there are brights spots, too. After Tymia was discharged from MUSC on June 22, two days later she won the Miss South Carolina Pre-Teen Pageant. She left the hospital dependent on a walker. Her mom was worried that she was too sick to compete.
"She said, 'Mom, please don't give up on me,' " Pitts said. "I said, 'Baby, I'll never give up on you.' "