Brittany Brown of Madison was on the way to a photo shoot for her newborn son when she got a phone call from the state health department. There was something abnormal in her baby’s newborn screening.

Since that day a year and a half ago, Brown and her husband have lived in uncertainty. Their son was diagnosed with Pompe disease, a rare genetic condition that causes muscle weakness and progressively gets worse. 

The first uncertainty came after the call: What is Pompe disease?

“I’ve never had a feeling like that,” she said. “… there’s no comparison to getting a call and Googling something like that and thinking that’s what your situation is when you thought you just birthed a healthy child.” 

The Google search produced even more uncertainty. There were two types of Pompe Disease, one more severe than the other, she learned. Which did he have? 

“We lived in this limbo for a few weeks waiting to find out what kind he had,” Brown recalled. 

Her days now are devoted to making sure her son doesn’t fall behind in his specialist appointments and twice-monthly, $20,000 infusions that ensure he is able to walk, swallow and perform other basic tasks. His weekly visits to a physical therapist and an occupational therapist are critical, and his doctors keep a close eye on his health – any regression that goes unaddressed could quickly become permanent.

And in recent weeks, she’s been dealing with yet another unknown.

The University of Mississippi Medical Center, where her now 18-month-old sees a slew of specialists and therapists and receives his life-saving medicine, is battling with her family’s insurance company, Blue Cross Blue Shield. If the two don’t reach an agreement by Friday, UMMC will go out of network with the company – meaning Brown and her husband could face massive bills or be forced to go out of state for their son’s care.  

Brown, and many other patients who either can’t or won’t go elsewhere, have not been able to get an estimate from the hospital of what their out of pocket costs would be if they continued with their UMMC providers. Brown said her son’s UMMC therapists are so wonderful, and so hard to get in with, that she is considering paying out of pocket to keep her son’s spot. 

But she said she’s been told they can’t give her any idea of what the costs would be until after UMMC is officially deemed out of network with the insurance company. 

Brown’s son is one of tens of thousands of Mississippians who will be impacted if UMMC and Blue Cross Blue Shield don’t settle on the terms of their contract. 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. 

The public battle is a classic he-said, she-said: UMMC officials say they are only asking for the insurance company to reimburse at “under market rate” prices compared to other academic medical centers. Blue Cross leaders see it a different way. 

“Blue Cross & Blue Shield establishes payment rates on the market rate for Mississippi, not what out-of-state providers are paid,” said Cayla Mangrum, manager of corporate communications for Blue Cross Blue Shield of Mississippi. “UMMC is asking for an overall 30% increase for all of its hospitals and all of its providers. Think about it this way: UMMC is asking that a nurse practitioner in a UMMC Clinic in every city in the state be paid more than every non-UMMC nurse practitioner. UMMC is asking that a physician at UMMC – Grenada be paid more than the physician at any Baptist hospital …” 

But those at UMMC maintain their physicians should be treated differently than other hospitals. UMMC treats the sickest of the sick and is home to the only children’s hospital, the only Level 1 trauma center, and the only organ, tissue and bone marrow transplant program in the state.  

“Blue Cross wants to compare us to other Mississippi hospitals, but there are no hospitals in the state like us,” said Dr. LouAnn Woodward, vice chancellor for health affairs and dean of the School of Medicine. “Every day we treat patients across Mississippi, many with nowhere else to turn, because they need the specialty physicians found only here at UMMC.” 

But for the Mississippians who rely on those specialized services, disagreements between hospital and insurance executives don’t mean much to them. Their concern is how and whether they and their children will receive life-saving care without going bankrupt – and leaders at both UMMC and Blue Cross are aware of that. 

“Unfortunately the patients are caught in the middle of this dispute,” said Dr. Alan Jones, associate vice chancellor for clinical affairs at UMMC. 

Lanier Craft of Brandon also has a son with Pompe disease. For eight years, beginning with his diagnosis at three months old, mother and son have trekked to UMMC for appointments with specialists in Ear, Nose and Throat, complex care, cardiology, pulmonology, orthotics, ophthalmology, neurology and surgery.

Her son Townes receives the same infusions of medicine as Brown’s son – except he gets them weekly. Townes is also wheelchair bound, has a tracheostomy tube and is on a ventilator – making the prospect of regular trips three hours away to New Orleans, Birmingham or Memphis even more daunting. 

“The truth is we can’t go anywhere else,” said Craft, crying. “This is all there is for us. Batson has been there since I walked in the door in February eight years ago with my child. They have done everything for us, and to just completely lose that within a day because of an agreement over money is unimaginable.”

Craft, a teacher, said the past week has been a frenzy. Her son has always been on her husband’s commercial plan, and if she tried to switch him to her state plan, he would either not be accepted because of a pre-existing condition or be extremely expensive.

She took half a day off work Tuesday to make phone calls: to doctors; Blue Cross Blue Shield of both Mississippi and Tennessee, the state her family has insurance through; the insurance commissioner; and any connections she has with offices and agencies who might help.

The calls got her nowhere, she said – a similar outcome reported by others who spoke to Mississippi Today. Several reported they would call UMMC’s help line only to be told to call Blue Cross. Blue Cross would then tell them they would have to call UMMC. 

Around 2 a.m. Wednesday morning, Craft was awake with her son, who was struggling to maintain healthy oxygen levels. Waking in the middle of the night to tend to a health issue with the eight-year-old is common for her.

“My first thought was ‘I can’t take him to the hospital, I don’t know if he’s going to be covered,’” she said. “The first thought as a parent (in that situation) should not be ‘How am I going to afford this?’”

The fallout between the insurance company and the state’s only safety net hospital does not just impact Mississippians with rare, complex conditions.  

One mom of four who spoke to Mississippi Today but did not wish to use her name in the story  has spent the last three months fighting to figure out why her daughter is so sick. 

After an eight-day hospital stay and a diagnosis of Kawasaki Disease last year, her daughter began developing unexplained sores. Despite multiple treatments recommended by specialists at Children’s of Mississippi, they didn’t improve. Her hair began falling out and she lost weight. 

Her daughter’s pediatrician and UMMC dermatologists ran tests for various infections, but all came back negative. The doctors last week directed her to Children’s of Mississippi for a biopsy.

She scrambled to get her daughter in for the procedure before Friday, April 1, when UMMC will be considered out of network. It is scheduled for Thursday – just one day before the deadline for a contract agreement.

But regardless of the biopsy results, her daughter will still need care at UMMC – and the insurance dispute has added another layer of stress to an already stressful situation, she said. 

“We will do whatever we need to do, but we only have so much savings,” she said, noticeably emotional. “One of her bills was $79,000 from when we were in the hospital… and Blue Cross paid $78,000 of that. So what else are we supposed to do?” 

Because Blue Cross and UMMC have had similar public disputes in the past, some patients remain unphased, believing they will work it out as they have done before. 

But while Blue Cross and UMMC disagree on a lot, they both agree on one thing: the chances of this getting worked out before April 1 are slim. 

“We at UMMC don’t believe it’s going to get worked out,” Jones told Mississippi Today on Tuesday. “We’ve seen no good faith effort by Blue Cross to try to negotiate with us.” 

Leaders at the insurance company said they are “not optimistic” an agreement will be reached before the deadline, but maintain they have been working to reach an agreement with the hospital. 

“The fact we have not agreed to their reimbursement or quality demands does not mean we have not acted in good faith,” said Mangrum. “Since early 2021, we have had a dedicated team meeting with UMMC personnel and evaluating the financial impacts of reimbursement demands as well as quality improvement programs under which UMMC could have received additional payments if they met certain criteria.” 

The post Mississippi’s largest hospital and insurer ‘not optimistic’ about reaching an agreement, leaving families in impossible positions appeared first on Mississippi Today.