Children with cystic fibrosis, rare genetic conditions and transplant recipients who receive care at the University of Mississippi Medical Center will now face astronomical medical bills or be forced to get their care elsewhere if they are insured by Blue Cross & Blue Shield of Mississippi.

Federal law required UMMC, the state’s safety net hospital, to continue honoring in-network rates for certain patients for a 90-day period after it went out of network on April 1 with Blue Cross, the state’s largest private insurer. That required “continuity of care” period expires Friday, putting many adults and children in a tough situation with no timeline of if and when it will end.

Starting then, the hospital will only honor in-network rates for emergency care for patients with Blue Cross.

UMMC spokesperson Marc Rolph said the institution had “no comment” when asked whether any exceptions would be made for certain patients to continue their care at the in-network rate. He also responded “no comment” to questions about the financial losses UMMC has incurred as a result of this dispute and whether there are any updates on the status of mediation with the insurance company. 

Cayla Mangrum, manager of corporate communications at Blue Cross, said they are prohibited from discussing mediation. She did not answer a request for comment on the continuity of care period expiring. 

In the meantime, patients and their families are scrambling to make plans for what’s next.

Three-year-old Emmett Rymer was diagnosed with hydrocephalus while in his mother’s womb and has been seeing doctors at UMMC since before he was even born. He will now be traveling to Baton Rouge to see an entirely new team who will monitor the shunt in his brain and his seizures, his mother Ashton said.

Jett Brown is a 20-month-old who has a rare genetic condition called Pompe disease. His mother Brittany has started the process of transferring his care to LeBonheur Children’s Hospital in Memphis, a three-hour drive from their home in Madison.

Christy Van, whose 8-year-old son Cooper has cystic fibrosis, is trying to put together the puzzle pieces to keep him at UMMC, the only accredited cystic fibrosis center in Mississippi. She can’t remove him from her husband’s Blue Cross insurance until later this year during open enrollment, and even then it wouldn’t take effect until January. 

Cooper goes to appointments at UMMC at least every three months and often more frequently to see a dietitian who works with him to ensure he’s gaining an adequate amount of weight since gastrointestinal issues can make it difficult.

Trae McWilliams of Yazoo City won’t be able to go to his regular appointment in August with the pediatric craniofacial team at UMMC, the only such team in the state. McWilliams has been seeing those specialists and others at UMMC all 12 years of his life for several conditions, including a submucousal cleft palate, and has undergone five surgeries at the hospital. 

His mother Samantha said she will likely reschedule the appointment for later in the year in hopes that UMMC is back in network with her insurer by then. 

“I would hate to know how much the bill (for that appointment) would cost (out of network) because you’re seeing, like, 14 different specialists at one time,” she said.

Rymer’s mother Ashton said their pediatrician in Natchez has already made the referral to the children’s hospital in Baton Rouge for her son, who has had three brain surgeries at UMMC – including one on the day he was born – and suffers seizures that land him in the hospital for days and require several follow-up appointments.

“Not being able to go (to UMMC) is not only inconvenient but detrimental to his care and his health,” she said. 

Her son is actually doubly insured through both her and her husband’s jobs, both of which are Blue Cross plans. But the thousands they pay each year won’t help him continue his care with his UMMC team.  

Insurance Commissioner Mike Chaney has warned Blue Cross it could be violating state law if certain providers like UMMC are out of network to its members. In a March letter to the company’s CEO, he expressed concern specifically about UMMC’s Level IV Neonatal Intensive Care Unit, the pediatric and adult congenital heart programs, the children’s cancer care program, the sickle cell anemia program and the organ transplant program. 

State law requires health insurance companies to maintain a network of providers that assures “adequacy, accessibility and quality” of care. The law specifies certain services that must be accessible within a certain time and distance of the insured. Blue Cross has maintained it is adequately meeting these requirements even when out of network with UMMC. 

Chaney said he could not comment on specifics regarding the dispute or the status of the mediation between the two parties, but that if he believes insurance members don’t have access to legally required care, he will act.

“We will take some pretty hard-line actions against all the parties on network adequacy,” he told Mississippi Today on Wednesday. 

Jett Brown, who has Pompe disease, sees therapists and a slew of specialists, including a neurogeneticist, at UMMC, which is home to the state’s only children’s hospital. He also receives twice-monthly, $20,000 infusions to ensure he is able to walk, swallow and perform other basic tasks. 

Jett’s mother Brittany Brown squeezed in as many appointments as possible over the last three months in case the contract dispute was not resolved by the continuity of care deadline. Several weeks ago, she received a letter in the mail from UMMC. 

“When the continuing care period ends June 30, 2022, all future care, except for emergency services, provided by UMMC to Blue Cross commercial health plan members will no longer be considered as in-network care, but instead will be out-of-network care,” a June 15 letter from Dr. Alan Jones, associate vice chancellor for clinical affairs at UMMC, stated. 

Then, in bold: “Therefore, beginning July 1, 2022 with the exception of emergency services, you will be responsible for the full bill for items or services provided by UMMC, less applicable UMMC discounts.” 

Brown knows if Jett continues at UMMC, she’ll have to pay large bills for him to continue seeing his pulmonologist, cardiologist, neurologist and neurogeneticist. She’s still unclear what will happen with his infusions as the UMMC doctor is involved in those but they are administered by a non-UMMC clinic. 

Brown is not aware of any other neurogeneticist in the state, and she knows that if she were to switch him to other specialists, there’s no guarantee those doctors would be familiar with the intricacies of Pompe. 

“We can go to Baptist, and maybe there’s a cardiologist there, but they probably don’t know anything about Pompe. It’s just not the right fit for him,” she said.

She said she’s already spoken to one of Jett’s doctors about transferring his care to LeBonheur Children’s Hospital in Memphis, a three-hour drive from their home. 

“At this point the doctor’s hands are tied. They don’t have control over that – they’re unhappy about it, too, I’m sure, because they know these kids and they know what to look for and what to ask,” said Brown.

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