What Insurance Doesn’t Cover For Children With Genetic Conditions


A Survey of Parents in the New York-Mid-Atlantic Region

NYMAC conducted a consumer survey to identify gaps in coverage and to assess care coordination.
The results of the survey will be used to create tools for advocacy.

The New York-Mid-Atlantic Consortium for Genetic and Newborn Screening Services (NYMAC) is a Regional Genetics Collaborative funded by the Health Resources and Services Administration. NYMAC serves individuals with genetic conditions living in Delaware, Maryland, New Jersey, New York, Pennsylvania, Virginia, Washington, DC and West Virginia. NYMAC collaborates with healthcare providers, public health professionals and patients to identify the needs of individuals living with genetic conditions and to plan activities to address these needs.

Individuals with genetic conditions rely on insurance to cover essential healthcare services. NYMAC conducted a consumer survey to identify gaps in coverage and to assess care coordination. The results of the survey will be used to create tools for advocacy. Parents with a child up to 21 years of age with a genetic condition were eligible to take the survey. The survey was distributed to parents through the NYMAC email list, NYMAC Facebook page, Family Voices and Parent-to-Parent groups.

From across the NYMAC region, 184 parents responded to the survey. Most parents lived in New York (73) and Maryland (58). Parents also responded from Delaware (3), New Jersey (20), Pennsylvania (22) and Virginia (8). There were no responses from Washington, DC or West Virginia.

The survey showed that many parents are paying significant amounts of out-of-pocket costs for medical insurance and medical care including premiums, deductibles and overall annual out-of-pocket costs. More than half of families have difficulty paying for care and 42% had to reduce their time at work to care for their child.

• 60% of children with genetic conditions in the NYMAC region have premium costs over $1,001 and 43% have costs over $2,000.
• 67% had deductibles up to $2,500 and 33% had deductibles over $2,500. Twenty percent of parents pay more than $5,000 for costs beyond deductibles.
• Parents were asked to provide their child’s type of insurance coverage (Public – 27%, Private – 43%, Both – 29%,  ininsured – 1%). The overall costs are highest for those with private insurance, with more than 60% paying greater  than $5,000 per year and greater than 60% of those with public insurance paying less than $500 per year. Most parents whose child is covered by both public and private insurance are paying between $501 and $1,000 per year.

“Imagine a family where all four members need hearing aids, and none are covered by insurance….”

The survey results can be used to understand gaps in coverage for essential health benefits. Comments regarding coverage provided by parents bring to life the real voices of the consumers. Their comments show that coverage is often either lacking or requires a large time investment from parents.

Coverage for some essential health benefits (medications, laboratory services, hospitalization, prenatal care, outpatient services, and emergency services) was excellent with greater than 97% of parents indicating at least partial coverage for these services. However, for other essential health benefits, especially those critical to individuals with genetic conditions, coverage was substandard. For example, prescribed medical foods, essential nutritional replacements and feeding devices and supplies were not covered at all for 21% of individuals with genetic disorders. Sixteen percent of parents are paying completely out of pocket for habilitative services needed to gain a new skill or prevent worsening function.

“Our son has services during the school year through the state but we would like to send him to behavioral therapies and speech therapies during the summer and as a supplement, however they are not covered… In the summer my son’s social functioning regresses greatly… however there is no allowance for these things and every year we start the school year catching up with months of regression.”

Forty-seven percent of parents incurred some cost for medical devices, like wheelchairs, braces and hearing aids.

“We needed a special bed, and finally got the private insurance to cover, but only after it was denied three times, at which time I took our son down to the national office… After that meeting, they decided to cover the bed. But most parents wouldn’t go to those extremes.”

“My son is not in a wheelchair permanently but needs one for a few months due to muscle weakness and loss of strength. They will not pay for a wheelchair. They also will not pay for his oxygen needs or assistive speech devices.”

Parents also answered questions about coverage for specific services. Eighty percent of parents responded that  non-prescription medications were not covered and 68% of parents responded that modified foods were not covered. These medications and foods are essential for many children with a metabolic disorder.

“Medical food is paid out of network unless you fight with the insurance company to get the company you want to buy food from as in-network. I have been fighting with insurance company since January and just recently got the company for medical food approved. Therefore, I should receive my first shipment of food next week – hopefully. My kids have been out of the low protein food for 4 months – unbelievable amount of work involved and time!”

Other specific services that are not covered for at least 30% of respondents included equipment to support ADL, hearing aids/amplification, home care and adaptive equipment.

Medical home and care coordination go hand-in-hand. In a medical home, the patient, their family, primary care provider and specialists work together to coordinate the child’s medical care. Most parents of children with genetic conditions responded that they have a key component of a medical home, a provider who they feel is their personal doctor or nurse. However, most of these parents expressed a need for extra help with care coordination. Parents with private coverage for their child were less likely to express need for extra help with care coordination.

“My daughter is seen in over 20 different clinics in a children’s hospital. I’m often in need of help when 3 or more providers differ on the plan and I feel I’m supposed to choose.”
“Extreme parental fatigue”
“I’m on the phone constantly managing doctor appointments, medications, prescriptions for services, DME, home care scheduling”
“That would be me, his mother. It’s mostly us parents…I let them know everything that is going on with other  providers to ensure it all ends up in the medical record.”
“We have an insurance case worker who has helped advise and our family doctor is very involved”
“In offices: nurse, doctor, staff assistant—often only to do referrals and set up appointments.”

Parents overwhelming identified long wait lists for needed services as a barrier to accessing medical care for their child. Other barriers to service included “providers not in our network” (71%); “we could not identify providers we  need” (60%); “it is too expensive to pay for what insurance does not cover” (59%) and “it is too far to travel to some services we need” (57%).

“No mental health providers will accept our health insurance”
“Closest services are an hour away which is fine traveling for the average person but asking a child struggling with issues is a lot to ask.”

More than half of parents of children with genetic conditions find it too expensive to pay for what is not covered.

“Physical therapy is a big gap… It’s there but not filled consistently. ..too difficult to get to and would cost too much out of pocket. No Medicaid available to help pay the PT.”
“We recently had whole exome sequencing done in an attempt to finally get a diagnosis for her, which is a very expensive test, and insurance didn’t cover any of it.”
“I have to sacrifice OT with a therapist who adds a lot to our child’s development because we cannot afford all of the things that my son needs.”

The survey provided information about gaps in coverage for children with genetic conditions. Families frequently  pay high premiums and deductibles. In addition, they also struggle to pay for necessary equipment, non-prescription medications and medical foods. Awareness and advocacy are needed to educate policy makers about the high cost and emotional burden of paying for and coordinating medical care for children with genetic conditions. These data and the quotes from families collected in this survey will be used to create materials for advocacy. Further surveys will explore gaps in specific coverage areas, for example, medical foods. NYMAC is also participating in a national needs assessment to capture information regarding availability and accessibility of genetic services.•

Acknowledgements: We are very grateful to the parents who completed this survey. We also thank Susanna Ginsburg and Sharon Carothers of SG Associates Consulting for their work on the survey and data analysis.

Beth H. Vogel, MS, CGC, is Project Manager of the New York-Mid-Atlantic Consortium for Genetics and Newborn Screening Services.

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