A MOTHER'S INSPIRATION

When Pat and Dolph Geurds rushed their 7-year-old daughter to the hospital on Aug. 15, it was an all-too familiar experience. When the Geurds' health insurer refused to pay for medication during her stay, that, too, was par for the course. Kinsley Geurds has spent a third of her young life in the hospital, her mother estimates, dealing with severe disabilities that affect multiple organs, most acutely her brain and gastrointestinal tract. Yet despite seven agonizing years of treatment and testing, the underlying cause of her illnesses remains a mystery, and that, the family said, has led to continual fights with their insurance carriers. Now, her struggles could lead to a change in state law, as legislators in Trenton push to restrict insurers' ability to delay care for children with complex medical issues.

"My child doesn't have a diagnosis," Pat Geurds, who lives in Pennington, said in an interview. "She has 21 different symptoms."

The family and their advocates say life with an unexplained condition is made harder when insurance companies dictate care based on formulas that don't apply to such a unique situation. Kinsley's struggles have inspired two bills waiting to be heard in the state Senate and Assembly that aim to ease the red tape as they fight from one phase of life to the next.

Kinsley suffers from seizures and can't process food that isn't piped in through an IV or directly into her digestive system. She's had over 50 medical procedures, Pat Geurds estimates. Her mid-August episode alone triggered three visits to the Nemours/Alfred I. duPont Hospital for Children in Wilmington, Delaware.

The child has been seen by top doctors across the country. Still, her condition is undiagnosed.

"They have sequenced her entire genome and there's nothing that identifies her medical problems," said Katie Riewe with Princeton Nassau Pediatrics, Kinsley's doctor since birth.

Pat Geurds said Kinsley, her fifth child, arrived after a normal pregnancy. Then, around 2 months old, the girl's skin began turning blue. Tests revealed her stomach was malformed and her brain smaller than it should have been.

"Her brain has formed in a way they have never seen in America, so as of now, they think whatever she has has not yet been discovered," the mother said. "They originally said she wouldn't live to be a year and here she sits seven and a half years later, so she's a real wonder."

Complex medical needs

"Complex medical needs," is the catchall description for patients in Kinsley's situation. About 7% of U.S. children fall into the category, according to the Children's Hospital of Philadelphia.

The Geurds say they're locked in a constant battle with a health care system that wasn't designed with them in mind. That's turned developmental milestones like sitting, eating, or first steps - snapshot moments for most families - into minefields, with the insurance carrier questioning each assistive device, medication and procedure, Kinsley's mom said.

Insurers have algorithms, or models for diagnoses, said James Malatack, a doctor at the Nemours/Alfred I. duPont Hospital for Children who has treated Kinsley. Each medical problem is mapped out and paired with treatment options and costs, and those expectations are then applied to individual cases, he said.

But "kids who have a condition like Kinsley don't follow a script," said Malatack, who specializes in patients who can't be easily categorized.

It's commonplace to hear physicians in his practice arguing with insurers, he said.

"Part of their job is to reduce cost and in some ways they have started practicing medicine. They dictate a lot of medical care and you have to argue with them all the time," Malatack said.

"Kinsley's health conditions are indeed complex and we understand that creates added challenges for everyone," said Thomas Vincz, a spokesperson for Horizon Blue Cross Blue Shield of New Jersey, the Geurds' insurer.

The insurer assigned one of its case managers to Kinsley in June 2020, Vincz said in an email. "Since that time, her case manager has been in touch with the family more than 17 times by phone and, when unable to reach the family, sent letters."

Horizon Blue Cross also provides for round-the-clock private nursing care "to help ensure that Kinsley gets the care that she needs and that she is entitled to," he added.

Denied insurance claims can be escalated to a peer-to-peer review, when doctors get a shot to make their case to the insurance company's medical director, someone with enough knowledge who will make the final call on whether or not the company will cover a treatment. Here, too, Kinsley's family and doctors take issue. Both Riewe and Malatack said they often wind up in peer-to-peer reviews only to find the professional on the other end of the phone without the background to understand the decision at hand.

"Shouldn't a physician like me be talking to a colleague who knows these problems?" asked Malatack. "One time I had to talk to an adult surgeon about a medical condition in an infant."

During her most recent hospital stay, Kinsley was denied a medication called Levsin, which had proven effective at alleviating her painful cramps, he said.

Vincz said there was a problem with the prescription, which was submitted on a Friday. Horizon reached out to the doctor the following Monday to find Kinsley had already been switched to a substitute medication.

Pat Geurds said this wasn't true. She had reached out to state Assemblyman Anthony Verrelli, D-Trenton. It was his intervention that got the medicine approved, according to Geurds. Verrelli's lobbying also got the insurer to assign a case manager and approve in-home nursing, she said.

"He is the one who gets approvals for me when I am stuck."

Verrelli verified this in an interview but declined to say specifically how he helped.

Legislation would rein in insurers

Last year Verrelli introduced a bill that would require insurers to cover procedures, testing, equipment and prescriptions for people up to 18 years old with complex medical needs whenever a licensed healthcare provider deems it "medically necessary."

The legislation, A823, covers patients facing a diagnosis with a "high degree of outcome variation" that "requires specialized skills to provide care."

The bill, and a counterpart waiting to be heard in the Senate, would require insurers to make a decision within three days of receiving a letter from the health care provider.

"Sometimes the process can be dragged out," said Verrelli. "I've had that experience myself with things, whether it be a medication or a test. But with a complex medical disorder, sometimes time is of the essence."

The bill has picked up three more sponsors and co-sponsors and is now before the Assembly's Financial Institutions and Insurance Committee. Three state senators have introduced a similar bill that's waiting to be heard by the Senate Commerce Committee.

"For people whose conditions are really difficult, what you want is a system where they don't have to be constantly fighting with the insurer, said Gary Claxton, director of the healthcare marketplace program at the Kaiser Family Foundation, a Washington-based group that studies health policy.

Still, he cautioned that the legislation could have unintended consequences of its own, especially in a country with sky-high medical costs like the U.S.

As written, Verrelli's bill gives a lot of power to health care providers, but they "aren't always right," said Claxton, who worked on healthcare policy in the Clinton administration.

The legislation might be improved by creating a panel to mediate complex cases, he said.

"I would try to find some way there could be recourse that doesn't take forever but is fair."

Insurance delays have caused trouble throughout Kinsley's treatment, said Pat Geurds. From the pump that brings food to the 7-year-old's stomach to the equipment that helps her stand, sit and move, each request has led to lengthy debates, the mom said.

All were rejected and then had to be appealed in a months-long process. For a young child with complex medical needs, that can be too long, her mother said.

According to Geurds, the family requested a tub seat to help the girl bathe safely. It took Horizon Blue Cross months to approve the device. By the time it arrived, Kinsley had outgrown it and needed a bigger seat, her mother said.

"Kinsley is constantly moving," said Riewe, her pediatrician. "She can't sit steadily in a tub. If you take your hand off her she could be under water in two seconds."

While Kinsley has faced repeated delays in getting medical devices, it's unclear if that has hampered her development, said Riewe.

"It would be false to say that I think she would be walking if she received a gait trainer sooner because I don't know what her true developmental potential is," Riewe said.

But "you can extrapolate that some of the delays can cause problems with her being able to develop or maintain muscle tone and bone strength," the doctor said.

Malatack and Riewe said that fight has gotten worse through the years.

The fact that the Geurds are self-insured through Dolph's job as a real estate agent further complicates things, said Claxton. Unlike a large employer, the business is part of a smaller insurance pool with less financial resources.

"The plan has really high costs and they would probably rather not have her," Claxton said. "They can't really do anything about it except manage it as hard as they can. I am sure they would just assume this person go."

The accusation is "completely unfounded," said Vincz.

"As a not-for-profit company, we exist for the benefit of our members - not shareholders or investors," he said. "We value the trust our members place in us and being there for them when they need us most is what guides our work every day," he said.

Horizon Blue Cross has 3.7 million members, "including thousands with complex conditions and needs," according to Vincz. The insurer has a team of more than 300 case managers who work closely with patients, relatives and doctors to "develop and deliver personalized, individual case management plans," he added.

Children with complex medical needs account for 40% of all pediatric costs, according to the Children's Hospital of Philadelphia. The hospital took a look at the struggles families like Kinsley's face in 2019 and found problems on both sides of the equation.

Families face barriers to "adequate, affordable health care" while they bounce from specialist to specialist while also trying to coordinate among multiple insurance plans.

Meanwhile, "health care systems are facing growing challenges around capacity management." Handling too many clients with too few case managers often results in problems, the hospital stated on its PolicyLab website.

The Children's Hospital of Philadelphia suggested establishing a team of coordinators internally to handle complex medical cases at the hospital. They would act as facilitators between families and insurance companies.

The Geurds and their doctors hope the proposed legislation can help simplify care for kids like Kinsley.

"If there were a more objective definition and parents and pediatricians could sign off on that designation, then putting a reasonable timeframe on approval makes sense," said Riewe. "We have to get all insurance companies on board with that."

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Twitter: @myersgene