Brown and her husband lived in constant uncertainty since that fateful day, which was over a year ago. Their son was diagnosed as having Pompe disease, a rare genetic condition that causes muscle weakness. It gradually gets worse. After the phone call, there was a first mystery: What is Pompe Disease? She said, “I’ve never felt such a strong feeling.” “… There’s no comparable to getting a phone call and going online and seeing that this is what your situation was when you thought you had just given birth to a healthy baby. She learned that there were two types Pompe Diseases, one more severe than another. Which type did he have Brown said that they waited for weeks to discover what type he had. Now, her days are dedicated to making sure that her son is not behind in his specialist appointments. She also receives $20,000 twice-monthly infusions to ensure that he can walk, swallow, and do other basic tasks. His weekly visits with an occupational therapist and a physical therapist are crucial. Any regressions that go untreated could be very serious. In recent weeks, she has been dealing with another unknown. Blue Cross Blue Shield, her family’s insurer, is challenging the University of Mississippi Medical Center where her 18-month-old son sees a number of specialists and therapists. If they don’t reach an agreement before Friday, UMMC will be out of network with Blue Cross Blue Shield. This could mean that Brown and her husband face huge bills or have to leave the state to care for their son. Brown and other patients, who can’t or won’t travel elsewhere, haven’t been able get an estimate from the hospital about their out-of-pocket costs if they continue to use their UMMC providers. Brown stated that her son’s UMMC therapists were so amazing and difficult to access, she is considering spending out of pocket to maintain her son’s place. She said that she has been told she cannot get an estimate of the cost of the treatment until UMMC is removed from the insurance company’s network. Brown’s son is among the tens of thousands of Mississippians that will be affected if UMMC or Blue Cross Blue Shield do not settle their terms. The dispute between the two sides stems from differences over reimbursement rates, Blue Cross’ quality plan and Blue Cross’ performance in assessing whether patients receive adequate care. The public battle is a classic he said, she said: Officials at UMMC claim they only want the insurance company to pay “under market rate” prices compared with other academic medical centers. Blue Cross leaders view it differently. Blue Cross Blue Shield sets payment rates based on Mississippi’s market rate, and not what providers outside of Mississippi are paid,” Cayla Mangrum (manager of corporate communications, Blue Cross Blue Shield) said. “UMMC wants an overall 30% increase in the payment rates for all its hospitals and its providers. It’s like this: UMMC wants a nurse practitioner at a UMMC Clinic in every state to be paid more than any other nurse practitioner. UMMC – Grenada is asking for a doctor at UMMC – Grenada to be paid more than any physician at any Baptist Hospital . However, UMMC believes that their doctors should be treated differently from other hospitals. UMMC is the home of the state’s only children’s hospital and Level 1 trauma center. It also has the only bone, tissue, and organ transplant program. Blue Cross wants us to be compared to other Mississippi hospitals. But there aren’t any hospitals in Mississippi like us,” Dr. LouAnn Woodward (vice chancellor for Health Affairs and dean of School of Medicine) said. “Everyday we treat patients across Mississippi. Many have nowhere else to go, because they require the specialist physicians found only at UMMC.” However, for Mississippians who rely upon those specialized services, differences between hospital and insurance executives are not important to them. They are concerned about how and whether their children will be able to receive life-saving care without going bankrupt. Leaders at Blue Cross and UMMC are well aware of this. “Unfortunately, the patients are caught between the two sides of this dispute,” stated Dr. Alan Jones (associate vice chancellor for clinical affairs at UMMC). Lanier Craft, a Brandon mother, has a son suffering from Pompe disease. Since the time that his son was diagnosed at three months of age, mother and son have walked eight years to UMMC to see specialists in Ear and Nose and Throat and complex care. They also visit pulmonologists, orthotics, neurology, cardiology, ophthalmology and surgery. Brown’s son, Townes, receives the same medicine infusions as Brown’s son but he has them every week. Townes, who is wheelchair bound and has a tube for his tracheostomy, is ventilator-equipped, makes the prospect of frequent trips to New Orleans, Birmingham, or Memphis all the more daunting. Craft cried, “The truth is that we can’t travel anywhere else.” “This is all that is left for us. Since I first walked through the doors in February 2008 with my child, Batson has been there. They have done everything we need, and to lose that in a matter of hours because of an agreement over money would be unimaginable.” Craft, a teacher said that the past week was a mad rush. Her son was always on her husband’s business plan. If she tried to switch him over to her state plan, either he wouldn’t be accepted due to a pre-existing condition, or he would be very expensive. She took half the day off Tuesday to call doctors, Blue Cross Blue Shield in Mississippi and Tennessee (the state her family is insured through), the insurance commissioner and any other contacts she might have with agencies and offices that could help. She said that the calls didn’t get her anywhere – similar results were reported by other Mississippi Today interviewees. Several people reported that they called UMMC’s helpline only to be told to dial Blue Cross. Blue Cross then told them to call UMMC. Craft was up around 2 AM Wednesday morning with her son who was having difficulty maintaining healthy oxygen levels. Craft often wakes up in the middle of the night to attend to her eight-year old son’s health issues. She said that her first thought was “I can’t take him there, I don’t know how he’s going be covered.” “My first thought as a parent in that situation should not be ‘How can I afford this?'” Mississippians living with complex, rare conditions are also affected by the fallout between the state’s insurance company and its only safety net hospital. Mississippi Today spoke with a mother of four, who did not want to be identified. She spent three months trying to understand why her daughter was so sick. Her daughter developed unexplained skin sores after an eight-day stay in hospital and a diagnosis last year of Kawasaki Disease. They didn’t respond to multiple treatment recommendations from Children’s of Mississippi. Her hair started falling out, and she also lost weight. The tests were negative by her pediatrician and UMMC dermatologists. Last week, her doctors directed her to Children’s of Mississippi to have a biopsy. She raced to get her daughter in before Friday, April 1st when UMMC will not be considered. It’s scheduled for Thursday, just one day before the deadline to sign a contract. Regardless of the biopsy results, her child will still require care at UMMC – and she stated that the insurance dispute has added an additional layer of stress to an already stressful environment. She was clearly emotional and said that she would do what she needed to, but only had so many savings. Blue Cross paid $78,000 to cover one of her hospital bills. What else can we do? Blue Cross and UMMC have had similar public disputes before. Some patients aren’t worried, believing that they will resolve the matter as they have in the past. Blue Cross and UMMC may disagree on many things, but they agree on one thing: there is little chance of it being resolved before April 1. Jones said Tuesday that UMMC doesn’t think it will work out. “We have not seen any good faith effort from Blue Cross to negotiate with us,” Jones said. Blue Cross leaders stated that they were “not optimistic” that an agreement would be reached by the deadline but maintained they had been working with the hospital to achieve an agreement. Mangrum stated that “the fact that we haven’t agreed to their quality or reimbursement demands doesn’t mean we haven’t acted in good faith.” “Since the beginning of 2021, we have had a dedicated group meeting with UMMC staff and evaluating both the financial impact of reimbursement demands and quality improvement programs underwhich UMMC could receive additional payments if they met specific criteria.