Christy Van of Jayess didn’t know what was wrong with her son. It was 2020, and her six-year old, Cooper, was living with stomach issues that put him in near-constant pain and limited his ability to have a normal childhood.
They weren’t getting any answers from Cooper’s pediatrician or a gastroenterologist in Flowood.
“They tried to help him, but I really felt like they weren’t taking me seriously, and I knew that something else was wrong,” Van said.
That changed when her son was referred to Dr. Michael Nowicki, a children’s gastroenterology specialist at University of Mississippi Medical Center. After she told Nowicki about Cooper’s symptoms, he ordered a sweat test.
With that one test, Nowicki was able to diagnose Cooper with cystic fibrosis, a disorder that causes severe damage to the lungs, digestive system and other organs. The condition affects the cells that produce mucus, sweat and other bodily fluids, leading these fluids to thicken and block critical bodily functions.
The disorder manifested in Cooper as a pancreatic deficiency that prevents him from properly digesting fats.
“I’ve never been so shocked in my life. It was devastating for us,” said Van. “At first we were just so overwhelmed, but those doctors at UMMC took care of us.”
Cooper will have to visit a hospital every three months for the rest of his life. He currently sees Dr. David Josey, a pediatric pulmonologist at UMMC, along with a slew of specialists who help manage different facets of living with cystic fibrosis.
“It was just so devastating to me to hear the word ‘forever,’ but Cooper doesn’t dread (going to the doctor)… Cooper just really loves him (Dr. Josey) and his whole team.”
But now the future of Cooper’s care is uncertain. He is one of tens of thousands of Mississippians who have been impacted by UMMC going out of network with his family’s insurer, Blue Cross & Blue Shield of Mississippi. The dispute between the two stems from disagreement over reimbursement rates and Blue Cross’ quality care plan, which measures hospital performance and whether services provided to patients are adequate.
Cooper can continue receiving care at UMMC through his parents’ Blue Cross plan until July 1. Then, they have to make some tough decisions. Paying thousands of dollars per month out-of-pocket each month isn’t an option for a single-income household like his.
UMMC is the only accredited cystic fibrosis care center in the entire state of Mississippi.
Cooper has a daily at-home care routine that allows him to live a normal life. Every morning when he wakes up and before he goes to bed he uses a high-frequency chest wall oscillation device, or a vest that vibrates at a high frequency to clear his lungs of excess mucus.
He also takes a variety of medications that have cleared up his digestive issues.
The treatments prescribed by his UMMC doctor have allowed him to flourish and grow to be an energetic eight-year-old who loves to play sports, his mom said.
“It’s changed his life,” Van said of Cooper’s treatment. “You couldn’t look at him and tell that there was anything wrong with him.”
Switching Cooper’s care to a hospital in network with Blue Cross isn’t an easy fix. UMMC is. The closest alternatives are the University of Alabama Medical Center in Tuscaloosa and Tulane Medical Center in New Orleans.
Though it comes with added financial burdens, the only option the Vans see is buying Cooper a separate health insurance plan that’s in UMMC’s network.
“That is where I want him to be,” Van said. “They saved his life and have given him back his quality of life … we’re just hoping and praying that it’s going to work itself out.”
UMMC and Blue Cross have not been in communication since April 1, when UMMC officially went out of network with the insurance company, according to officials from both entities. Mississippi Insurance Commissioner Mike Chaney on Thursday penned a letter urging the two parties to utilize the same mediation process that was used to settle their contract dispute in 2018.
UMMC is asking Blue Cross for substantial increases to inpatient, outpatient and professional reimbursement rates, some as large as 50%. UMMC maintains it’s asking for below-market rates for academic medical centers. Blue Cross officials say that steep rate hikes would necessitate a substantial increase in customer premiums – despite a a Mississippi Today investigation that revealed the insurer is sitting on an enormous reserve of money.
Nicolette Brokaw of Vicksburg has been going to UMMC since she was a baby. Now an adult, she has been seeing the same doctor for a decade, who treats her for an Alpha-1 antitrypsin deficiency (AAT deficiency), a condition that significantly raises a person’s risk for liver and lung disease.
Six months ago when Brokaw received a letter from Blue Cross that alerted her to the contract dispute from UMMC, she decided it wasn’t worth worrying about. She couldn’t control the outcome, and they had resolved similar disputes in previous years.
Now, with UMMC out of network, she’s dreading the laborious and emotionally draining process of finding a new doctor who she trusts.
“I’m going to have to go through the process of giving my whole life story again,” Brokaw said. “They’re going to look at me like I have six heads, and I don’t want to go through that.”
An even bigger worry is finding a new doctor for her three-year-old son with autism, Liam, who has been receiving speech and occupational therapy at UMMC. Recently she’s become worried that Liam is having absence seizures, which are common in autistic children and involve brief, sudden lapses of consciousness.
Brokaw said Liam sometimes stares off into space for a bit, and her intuition tells her it’s not normal distraction. If she could, Brokaw would take Liam to Dr. Lamar Davis, a children’s neurologist at UMMC, who Liam has seen before.
“I wish I could go back to him for this problem, but I can’t because I can’t afford to pay out of pocket for a neurologist,” Brokaw said. “… I wish money wasn’t an object, but it is.”
Currently, Brokaw is trying to get Liam health coverage under a special eligibility category of Medicaid in Mississippi called Disabled Child Living at Home.
Although Liam has already been diagnosed with autism, due to Social Security disability rules, the Mississippi Division of Medicaid is requiring that he receive a behavioral evaluation with an autism rating scale to become eligible for coverage.
“The first diagnosis we got was black and white, but it’s not good enough,” Brokaw said. “It’s ridiculous.”
Brokaw is considering taking Liam to Ochsner Medical Center in New Orleans, but that comes with its own financial challenges. Even if she’s able to get an appointment there, the added gas and hotel costs are going to put added strain on her family, which relies solely on her husband’s income.
What really bothers Brokaw is the knowledge that the people making the business decisions that have put the health of her family, and others at risk are insulated from the consequences of those decisions, she said.
“I can’t imagine what these other people who basically live at the hospital are going through,” Brokaw said. “It’s these people that are taking the hit, not the CEO or the board members. They’re not going to have to worry about putting gas in their car. They go back to $500,000 homes. They can go to the doctor whenever they want to.”