Mom 1, insurance 0.

As fellow families living with rare diseases and disorders know, dealing with health insurance denials is, unfortunately, all too often a routine task. When the diagnostic tests, therapies, treatments and durable medical equipment needed to manage our children's serious and/or complex medical conditions are routinely denied by insurers, it throws our already inordinately exhausting lives into a tailspin.

My youngest daughter Charlotte, age 4, lives with Naa10, a rare genetic neurodevelopmental disorder. We manage her condition through around the clock supervision and care. She is nonverbal, in diapers, and no one is quite sure how much receptive communication she is capable of. She is quite expressive but does not have great physical control and handling her becomes increasingly challenging as she grows.

Charlotte's unique needs (a universe away from the challenges of a typical child, like her big sister), overwhelm us each day - and night. Charlotte will not willingly stay in a bed - not to go to sleep, and certainly not for an entire night. In June 2019, our pediatrician recommended we obtain a permanent special needs safety bed for Charlotte. We had tried having her sleep on a mattress on the floor (we had to remove her wooden bed frame after she hit her head on it one too many times). The mattress was covered with a mesh bed net we ordered off Amazon. Unfortunately, Charlotte quickly completely destroyed the mesh by throwing herself at the sides and learned how to unzip it herself. As months went by with no progress on obtaining a permanent bed, I ordered an inflatable Safe Place travel bed - a great temporary solution, but not something that will hold up to daily use for years on end.

Our pediatrician wrote a formal letter to our insurance company, requesting a special needs bed for Charlotte. The June 2019 letter noted that Charlotte's "significant gross motor and cognitive deficits are the basis of this letter to provide coverage for a safety bed of parents' choosing. This furniture is deemed to be medically advisable." The letter was followed by a formal prescription from Charlotte's medical geneticist in September 2019, so the vendor could begin the process of ordering the bed. We'd decided to order the same "Haven" bed that was working well for one of Charlotte's Virginia-based Naa10 'sisters.'

The bed is made to order and is nonrefundable. We were told the market price for this piece of durable medical equipment would come to approximately $10,000. Before ordering, we decided to seek authorization from our insurance company. They refused to issue a prior authorization or preauthorization. They refused this directly to me, to the health advocate retained by my husband's employer, to the vendor, to her pediatrician, and to the clinical pediatric group that transferred her prescription from the geneticist to the vendor. According to our insurer, per our PPO plan, we should go ahead and order the non-returnable, non-refundable $10,000 special needs bed. They would then let us know if it was approved or denied. They would not give us a prior authorization. They would not give us a preauthorization. We were jerked around for months.

In January 2020, at a loss, we filed a formal complaint with the Maryland State Health Insurance Administration. Before the month was out, we received - you guessed it - a formal denial from our insurer. They told us the bed was considered "furniture" - rather than the "durable medical equipment" it actually is. We tried appealing the decision and reaching out to elected officials. The situation, as always, was complicated - though we live in Maryland, my husband works in Virginia, and thus the "situs of care" for our family's employer-based insurance is Virginia. In May 2020, the State of Maryland Office of the Attorney General Consumer Protection Division sent a letter to the Office of Managed Care Ombudsman in Richmond, Virginia. The letter stated:

"CareFirst conveyed a Notice of Adverse Benefit Determination (Exhibit 1) dated 01/27/2020. Per that Notice, "A request for the review for the certification of a Haven bed with bunkie board was submitted to the Plan. According to the available clinical information, the member has a diagnoses of mutation in the NAAl0 gene and impulsiveness.". Charlotte is three years old, and her medical issues go well beyond "impulsiveness". Per the enclosed letter (Exhibit 2) dated 06/27/2019 from Raymond Coleman, MD, FAAP, Charlotte "... is a child with global developmental delay, hypotonia, mild dysmorphic features, and a genetic alteration in the NAA10 locus. She is being followed by multiple specialty physicians. Her significant gross motor and cognitive deficits are the basis of this letter to provide coverage for a safety bed of the parents' choosing.". The enclosed medical records (Exhibit 3) from Kenneth Rosenbaum, MD/Children's National Hospital and the enclosed summary Individualized Education Program (IEP) (Exhibit 4) further define Charlotte's medical issues and needs. 

CareFirst's enclosed response (Exhibit 5) to the HEAU's Appeal was to uphold their Adverse Benefit Determination on the basis that a safety bed is "furniture" and that furniture is an exclusion. A safety bed is no more a piece of "furniture" than is a wheelchair. Rather, a safety bed, like a wheelchair, is "Durable Medical Equipment" as defined in the enclosed "Member Contract, Attachment B - Description of Covered Services, Section 8 - Medical Devices and Supplies, 8.1 Definitions, Durable Medical Equipment" (Exhibit 6). CareFirst's labeling of a safety bed as "furniture" is ignorant, and CareFirst then using that ignorance as the basis for the Denial (i.e. Furniture is an Exclusion) is an insult." 

Unfortunately, nothing happened. The Commonwealth of Virginia told me that unless I wanted to change Virginia state law, or sue our insurance company, there was nothing to be done. Then, this past summer, Charlotte saw a new specialist (a physical medicine doctor), who wrote a new prescription for the permanent special needs safety bed. The new specialist ensured Charlotte's veritable litany of diagnoses, including global developmental delay, rare neurogenetic Naa10-related disorder, and autism, were considered in the request for approval. The new specialist also reached out to a different DME (durable medical equipment) company, which handled the negotiation with the insurance company for us, and managed to negotiate a price of $7,551.04 for the bed - our insurance agreed to cover $6,659.36 and our family's out of pocket cost was $901.68.

Thankfully, last week - sixteen months after our pediatrician wrote the initial letter - Charlotte's special needs safety bed was delivered to our home. Just remember - this special needs safety bed is one small piece of the medical intervention Charlotte requires. We can - and must - do better.

Fellow rare families - please share your stories!