Insurance barriers among systemic challenges for LGS families
Parent advocate offers tips to help manage care for kids, adults
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Insurance forms are a part of life for LGS caregivers.
When a child has Lennox-Gastaut Syndrome (LGS), it becomes a challenge for the entire family. Parents, siblings, grandparents, and even friends and employers need to learn how to manage it.
“An easier question would be what is not challenging and stressful for parents to fight for,” Tracy Dixon-Salazar, PhD, founder CEO of the LGS Foundation, said in an interview with Lennox-Gastaut Syndrome News.
At the top of the list of time-consuming, never-ending tasks is battling with insurance companies, said Dixon-Salazar, whose daughter Savannah died a year ago at age 31 from sudden unexpected death in epilepsy (SUDEP), a complication related to LGS.
“Getting the drugs covered is a major issue,” she said. “There are denials, prior-authorization delays and refusals, step therapy [the requirement that lower-cost drugs be tried first] nonsense, issues with drugs not being on formularies (especially rescue meds and new treatments), and quantity limits on treatments that don’t match the severity of the disease.”
Dixon-Salazar said an insurance company denied a $500 seizure safety helmet for her daughter, considering it “non-medical and no different than a bath safety bar used for the elderly.” But “they would pay for a $300,000 emergency room visit and admission to the hospital for a skull fracture,” she said.
“I have been a student of LGS for 30 years, and I find it hard to keep up on all of the latest” developments, Dixon-Salazar said. “I do not know how an insurance company can keep up with all the diseases out there. By the time they do an analysis, there is likely new data out.”
Appealing an insurance denial is a “huge burden’ for doctors as well as families,” Dixon-Salazar said. “They have to fill out forms, get on calls with the payors to explain why they need this treatment, try to explain that their years of expertise in treating LGS patients, and the fact that they have actually seen and examined the person, make them a better candidate for deciding how to treat them than the insurance company itself.”
Finding a doctor who specializes in LGS in the first place can also be difficult, according to Dixon-Salazar. “Few doctors know about LGS to help us appeal to the insurance companies,” she said.
Managing the transition to adult care
Everything about insurance changes when an LGS patient becomes an adult. When a child turns 18, parental rights end. This includes a parent’s access to medical records, the ability to make emergency medical decisions on the child’s behalf, and the ability to speak to doctors and others about their care.
Considering the ongoing needs and crisis communication challenges of someone living with LGS, getting ahead of the aging-out curve is critical, Dixon-Salazar said. Otherwise, patients “fall off a care cliff,” she said. “Medicaid and Medicare eligibility shifts, guardianship is learned about way too late, and few doctors know about LGS to help us appeal to the insurance companies.”
The LGS Foundation recommends that families start preparing well in advance, working with professionals to determine what paperwork they will need for guardianship or power of attorney. Guardianship laws differ by state, and the types of guardianships differ depending on a person’s needs and abilities.
LGS comes with challenges beyond paperwork. There’s the everyday burden of medications — a typical patient takes five to seven anti-seizure medications and one to three other medications, and may have limited or no mobility or need a special diet and/or a feeding tube — and the need to be on the lookout for seizures, Dixon-Salazar said.
“A typical LGS loved one is also having seizures every single week (sometimes every day) that cannot be controlled despite treatment (including brain surgeries and neuro-modulatory devices implanted),” she said. “This makes them prone to falls, injuries, and seizures that won’t stop without medical intervention with rescue medication.”
Dixon-Salazar and her team work with families daily to support their physical, emotional, and financial needs.
“I’ve dedicated my life to helping to end the devastation and suffering this disease causes,” she said. “At the foundation, we try to help families navigate the lifelong burden that this condition puts on the whole family and empower them to seek the best care for their loved one.
“Our LGS loved ones are amazing,” she said, “but LGS itself is absolute hell.”
