“The first child is the one that pays the most”: How one family carved out Medicaid coverage for a rare treatment

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Driving onto Interstate 35, Eric and Chelsy Nolasco left their home feeling more optimistic than they had in years — their son would finally get the lifesaving surgery he needed to have a functioning immune system, to fight infections, to stay alive.

And then came the phone call.

The apologetic, disembodied voice on the other end drowned out everything around them: Texas Medicaid had pulled their coverage of Gabe’s surgery because of clerical issues.

The state had once again blocked the Nolascos from helping their four-year-old son survive.

Anger came almost immediately, white-hot, livid, and teary as the Nolascos pulled over to the side of the interstate. They were halfway between their RV home in Whitney and the Fort Worth hospital that would have started Gabe’s treatment process, and had brought Gabe closer than ever to receiving the treatment he needed.

When Gabe was born in 2019, he was missing a thymus, the flap of bumpy tissue that should have sat above his heart shaped like two cashews nestled against each other. The organ would have educated white blood cells on how to fight off infections.

For kids with Gabe’s rare form of DiGeorge Syndrome, life expectancy hovers close to only two or three years because of their fully absent thymuses. It meant life inside a bubble to stay away from every kind of germ and heavy reliance on strong, advanced disease-fighting medications.

But in 2021, the U.S. Food and Drug Administration approved a “thymus transplant” for children like him. Doctors said it could extend his life, and since then, the Nolascos spent years trying to convince Medicaid to pay for the procedure.

Medicaid coverage — the health insurance for low-income families, disabled adults and pregnant Texans — often trails medical advances. But hurdles of clerical details stalled the process even after the Nolascos gained approval.

And this time, it had left them no choice but to go home and start again.

Chelsy craned her neck toward the backseat to share the bad news with Gabe. His “bucket list for when he has an immune system” — making friends, water parks, hugging Grandma — would have to wait a little longer.

Eric turned the car around, shielding his eyes from the late afternoon sun filtering in through the window. They decided to pick up pizza for their three other children, Johnathan, Ella and Zay, who would be confused and sad after already saying jittery goodbyes to Gabe earlier that day.

“Back to square one,” Eric said. “It’s like we start from square one every couple months.”

Gabe’s Medicaid journey

The first denial came in summer of 2022, when Gabe was two years old and medically stable enough to make the waitlist for a thymus transplant at Duke Children’s Hospital & Health Center in North Carolina, the only facility that does the surgery in the country.

Duke surgeons had performed the procedure for more than a decade on an experimental basis, but now that it was approved by the Food and Drug Administration, the Nolascos were hopeful. Gabe had made it this far, through two heart surgeries, chemotherapy and hospital stays for a range of heart issues.

Texas Medicaid responded differently.

“They said it wasn’t medically necessary for him to have this transplant,” Chelsy said. “And that was, of course, a slap in the face.”

They appealed, trying to speak with insurance officials about the situation and continued to push for coverage. But as they waited, Gabe, with sandy blonde hair that’s browned as he’s aged, who’s smiley and talkative, who wears thick-rimmed glasses like his favorite superhero’s alter ego, became sicker.

More susceptible to infections, Gabe contracted rhinovirus, a cold, and symptoms weren’t too severe. Human herpesvirus 6, a common illness for young kids, appeared in his blood, but didn’t seem to make him suffer. But in the late summer of 2022, he got norovirus, a stomach bug. The symptoms were constant and severe.

“When you have it for 24 hours, you’re just wrecked for a couple of days, but he’s had it for over a year now,” Chelsy said. “His gut does not absorb anymore. The only way he can get nutrition now is through an IV.”

He spent days in and out of the hospital, Chelsy always by his side, even bringing decorations to the hospital to brighten his room — “little things, superhero cutouts that I taped on the wall bring him some joy,” she said.

Doctors and nurses would wear full personal protective equipment before entering his room. When he could go home for stretches of days, his father and three siblings would be ready, all in quarantine themselves since he was born. Eric home-schooled the other kids, having been laid off from a factory in Blum, Texas once the coronavirus pandemic hit three years ago.

“It’s like he’s being a single dad,” Chelsy said. “And I’m being a single mom.”

A constant battle

A Medicaid committee makes decisions whether to cover new treatments and “reviews and updates Medicaid medical policies on a regular basis to include reviews of newly FDA approved interventions,” according to Health and Human Services Commission spokesperson Tiffany Young.

Young said the process to analyze the medical policy and fiscal impacts of adding a thymus transplant as a benefit “are currently underway.” But this process lacks transparency.

Dr. Joseph Turek, the chief of pediatric heart surgery at Duke Health said he didn’t understand how a thymus transplant could still be labeled an “experimental surgery.”

“The alternative to being able to get this done is usually devastating,” Turek said.

Chelsy and Eric only became angrier as their hope faltered. Younger children on Duke’s waitlist for shorter periods of time leapfrogged them because they had private insurance.

Chelsy made phone calls almost every day to Medicaid case managers and HHSC staff. Eric wrote letters and posted on social media. In the meantime, they were moving between Texas cities in their RV home because of landlord and access issues.

The address changes only complicated the insurance approval process.

“It really is a Medicaid issue,” Chelsy said. “They might agree to pay it, but then, they’re going to make you jump through 50,000 different hoops, and all while there are children dying, waiting to get this. There are children getting sicker. My son has gotten significantly sicker this last year.”

“Now, he’s going to have to fight even harder,” Chelsy added. “And why? Because we’re poor.”

They called and called until they met with more state agency officials. Soon, the state grandfathered them into the insurance for their new county. Things lined up to transport Gabe up to North Carolina, where coordinators at Duke Health had started to remember Chelsy’s name.

But what happened in July — their plans to head to North Carolina canceled as they were already on the road, their other childrens’ bags packed to break their yearslong quarantines — crushed them. Tax codes were changing, and all the doctors at Duke needed to be enrolled as providers under Texas Medicaid, but the process had yet to finish. The Nolascos couldn’t come.

Gabe had partially understood what happened. They had been blasting his favorite movie soundtrack, “Spider-Man: Across the Spider-Verse,” and turned the music down on the makeshift stereo when they took the call.

Gabe understood he needed to get to the Texas hospital, where an ambulance would take him to the airport and he would take his first ever airplane on a private medical flight to North Carolina.

As his parents explained and turned the car around, though, he only had one thought on his mind: to turn the music back up.

“We spent at least three or four days before that preparing him, like, ‘Hey, you’re going to be gone, you’re leaving, this is it, you’re going,’” Eric said. “His whole life, he’s been told, ‘this is what you need to get your immune system,’ which he pretty much grasps and understands. So for us to turn around and be like, ‘Hey, buddy, you know, it’s not happening anymore. Not right now.’ That must have been really tough.”

The road of Chelsy and Eric’s frustration veered into state politics. Chelsy called the office of state Sen. Brian Birdwell, R-Granbury, eventually meeting with his district manager and other HHSC officials. Birdwell’s office did not respond to multiple emails and phone calls from The Texas Tribune for comment to confirm the meeting happened.

“They kept telling us it was going to be expedited,” Chelsy said. “Up until literally when I called the senator’s office, explained our situation, explained what was going on and had a meeting with all of these big people, nothing was happening. They had kept telling me the same update for over six weeks.”

In the meantime, Gabe remained hospitalized at Cook Children’s Hospital in Fort Worth, needing constant treatment for his chronic stomach bug. Chelsy would sleep in his hospital bed next to him as nurses ran tests on him. She would read books to him and he would meet with a speech therapist.

On a quiet day, she could even take him right outside the hospital — as long as the staff wasn’t having lunch outside and there weren’t any crowds. Sometimes, she would walk him around the hallways in what she called his “bubble wagon,” a type of covered stroller that didn’t allow any germs to enter.

“He can’t go play in a playroom. He can’t go play on the playground,” she said. “It’s isolation. Strict isolation.”

Paving the way

Around mid-September, Chelsy got the call. Everything had paid off. They were going to Duke.

Wheeled out of the hospital in his wagon, Gabe smiled as his nurses at Cook Children’s cheered for him. Out on the airport tarmac, his extended family held up colorful signs with his name. They all wore masks and shirts about being related to a “heart warrior.”

Texas Medicaid hadn’t actually added thymus transplants as a benefit yet. Instead, the Nolascos accessed it under a specific benefit program for kids under 21 where FDA-approved treatments allowed by federal Medicaid but aren’t explicitly included in state Medicaid can be covered.

Weeks passed at Duke as doctors prepared Gabe, and Chelsy gave faces to voices she had spoken to for years.

The last, unpredictable chunk of their impossibly long wait still remained: getting a match for Gabe.

When infants have heart surgery, part of their thymuses are cut out and discarded. The transplant would instead take that tissue, process it in the lab and plant it bit by bit, like seeds, between muscle fibers in one of Gabe’s thighs, Turek said. This is because the thymus tissue has to be attached to something surrounded with blood vessels — a “vascular bed” — and the thigh works as a perfect home, he said.

After the procedure ended, though, things would be left to chance. It could take anywhere from six months to a year for the tissue to start producing the correct blood cells, and a chance lingered that it may not work at all.

One of Gabe’s doctors at Duke, Dr. Paul Martin, said Gabe was an “average, run-of-the-mill” kid compared to the dozens they have operated on with even more complex medical histories. But between his high cognitive ability and Chelsy attacking every barrier, they had still stood out.

“It was very special to meet a kid and have a kid who’s talking to you and laughing and just wanting to play, and if we could get his immune system to work correctly you would have a very happy boy who would be very thrilled,” Martin said.

“Gabe and his mom have been pioneers for Texas Medicaid,” Martin added, “and the first child is the one that pays the most.”

The night before Gabe’s transplant was finally scheduled, Chelsy rocked him in his arms, marveling. Across the country, back in Texas, at least one other child like Gabe was waiting at Cook Children’s. That child’s mother, Shannon Smith, said her son would have had to wait that much longer if Chelsy hadn’t done everything she had for Gabe.

“We sacrificed everything I think we could have,” Chelsy said. “We did it all for this opportunity. This moment. It doesn’t feel real.”

The next day, Duke Children’s nurses wheeled Gabe down the hallways as he chanted “Thymus Day,” Chelsy said. She recalled chanting along as strangers waved all around him.

“If Miles can do it,” he started to say, referring to his favorite Spider-Verse character, “I can.”

“It’s not Miles, and it’s not Hulk,” Chelsy said. “It’s Gabe and you get to be a superhero today.”

“I’m SuperGabe,” he said back.

“You’re SuperGabe,” she smiled, crying, and watched as the doors closed behind him.

Neelam Bohra is a 2023-24 New York Times disability reporting fellow, based at The Texas Tribune through a partnership with The New York Times and the National Center on Disability and Journalism, which is based at the Walter Cronkite School of Journalism and Mass Communication at Arizona State University.