A Lawrence County family is facing a difficult time as their primary medical provider and health insurer have decided to part ways. 

Cooper Van is very similar to any other 8-year-old in Southwest Mississippi.

He loves baseball and basketball. He enjoys being outside, has a great attitude toward life and is very energetic.

Anyone who sees the second-grade Topeka Tilton student would never know Van is fighting a lifelong battle with an inherited disorder that causes damage to the lungs, digestive system and other organs. 

Van was diagnosed with cystic fibrosis as a 6-year-old kindergartner. He was having some major digestive issues. Although his pediatrician found and treated him for a parasite, he was sent to Dr. Michael Nowicki, a gastrointestinal specialist at Batson Children’s Hospital in Jackson. 

Nowicki tested Van for cystic fibrosis — “Just to rule it out,” his mother Christy Van said — and the result confirmed the doctor’s suspicion. Though Christy and her husband Keith were both carriers of the disorder, and the disease is normally identified near birth, for some reason their third child had not been diagnosed until then, July 2020. Their older daughter and son were tested as well, and neither had the disorder. 

But once Cooper had been diagnosed correctly and turned over to Dr. David Josey at Batson, medicines and treatments began and the young patient showed dramatic improvement within 24 hours. 

“The minute we got to Batson, our problems were solved,” his mother said. “His first x-ray showed some minimal lung damage. We’re just so thankful for that, because he had been almost seven years without being diagnosed, and so not being treated.”

Every three months, the Vans travel from their Jayess home to the University of Mississippi Medical Center’s children’s specialty hospital. Cooper sees a team of people there every time — the pediatrician, a dietician, a respiratory therapist, a social worker, nurse practitioners, pharmacists — seven or eight people each visit. Mom Christy said it’s this team that keeps her son as healthy as he can be and keeps them informed on everything to do with his care. 

They are grateful to and dependent on the team they all trust and Cooper has grown to love. But a recent breakdown of negotiations between UMMC and insurer Blue Cross Blue Shield of Mississippi has thrown a wrench into the otherwise well-oiled machine of Cooper’s care.

The medical center’s contract with BCBS of Mississippi expired March 31 after the two failed to agree on how much the insurer should pay for patient care.

According to UMMC, the proposed reimbursement from the insurer was not enough. 

“We must have fair reimbursement so that we can provide the services, programs and facilities that patients and families need and must have, now and in the future,” said Dr. LouAnn Woodward in a statement. Woodward is UMMC’s vice chancellor for health affairs and dean of the School of Medicine.

BCBS-MS manager of corporate communications Cayla Mangrum said the company has been working with UMMC on negotiations since early 2021, but UMMC’s demands made it difficult to finalize an agreement. Mangrum said via statement that UMMC was requiring significant payment increases of more than 50 percent for certain services and 30 percent overall.

Woodward said the 30 percent increase requested would put them at the same level as comparable centers in the region, including New Orleans, Birmingham and Memphis. The rate “moves us closer to — not equal or more than — market rates,” she said. 

Keith Van has worked for the same employer, AT&T, for nearly a quarter of a century and his family’s insurance provider is BCBSMS through that employer. Leaving is not an option — neither leaving his employer nor his son leaving his team of caregivers.

“I wish UMMC would budge. I wish Blue Cross would budge. There’s no winner,” Christy said. “But Cooper’s team has worked so hard. We knew this was coming … but we never believed UMMC and Blue Cross would not settle.”

Batson social worker Melissa Underwood has worked hard to keep them informed, Christy said, contacting them with any new information and requesting copies of any new information the family receives, on all levels of care and the status of coverage. Underwood has been busy gathering options for the Vans, so they can continue to utilize Batson’s services past the cutoff date of July 1, assuming nothing changes. The Vans will get that information in the coming days.

“I you have a child in the state of Mississippi and you have Blue Cross Blue Shield, this could affect you at some point. It affects your trust, that something could be taken away from you like that,” she said.

They are not sure what they’ll need to do, exactly, but it won’t involve leaving their doctors. UMMC is the only CF-accredited hospital in Mississippi. The closest options are Tulane in New Orleans and the University of Alabama Birmingham — and neither are practical options for the Vans. 

“We’re not leaving his team. We’re not leaving UMMC. We’re not leaving Dr. Josey,” Christy said. “We want to stay with the doctors we love and trust — more importantly, the doctors that Cooper loves and is comfortable with.”

Now 8 years old, Cooper will need to see his team every three months for the remainder of his life. He takes medicine and treatments twice every day at home, but he still has to be monitored and treated by his physicians. Pharmacists call the family regularly to check on his progress and how the medicines are working for him. 

It was hard for his family to come to grips with everything Cooper has to do to stay healthy, but they know it could be so much worse. He has not had bad lung infections compared to many CF patients, and has never been hospitalized because of the disorder. Even the timing of his diagnosis came when the COVID pandemic was taking hold and people were already getting used to being more health-conscious and careful. It made some of the transition easier. 

Cooper has never cried or complained about the treatments, his mother said. He even looks forward to his quarterly visits to Batson. 

“He is just one of the blessed children. I believe this was all in God’s plan,” Christy said. “I don’t mind telling Cooper’s story. I’m just so proud of him and the way he’s handling this.”