The John A. Wilson Building in Washington, D.C.
The John A. Wilson Building. Credit: Darrow Montgomery/FILE

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What if it wasn’t so rare for infants and kids in the District with rare diseases to get the foods they need covered like any other prescription? What if barbers and beauticians could help with a person’s mental health, not just their locks? What if minors lacking a responsible adult in their lives could access their own health records and appointments? These were some of the key thought experiments tested at a D.C. Council public hearing yesterday when the Health Committee heard a bevy of bills.

One bill in particular, the Medically Necessary Foods Coverage Act of 2021, drew support from the committee.

The Gist: Health insurance companies would have to foot the bill for medically necessary foods a health care provider orders for common conditions like Crohn’s disease and rare conditions (becoming less and less rare) like eosinophilic esophagitis (“asthma of the esophagus”) and PKU, which is a genetic disorder that makes it impossible for a person to get protein and other essential nutrients without a specific food formula. In such cases, the formulas are as expensive as they are restrictive, especially for underinsured parents of infants and children with these conditions. 

The Grist: As food insecurity and malnourishment has soared among D.C. kids during the pandemic, getting medical foods covered for residents and especially children at risk for malnutrition is a critical issue. City Paper has reported on how bouts of malnutrition in developing brains can leave lasting effects on children—something that worries Nirmal Maitra, a Georgetown medical student, co-founder of nonprofit Heroes for Hearts, and public witness at the hearing. 

“Without access to these medically necessary foods, these individuals may suffer irreversible damage to their cognitive and physical health,” Maitra said, “leading to a massively decreased quality of life, increased financial cost, both in the short and long term to them and their families.”

Howard medical student Myra Khushbakht put the financial cost in perspective: The average per capita income of a D.C. resident is $55,000—and an adult with PKU would spend nearly half that amount to pay for their essential food formula were it not covered by insurance, she said.

For Ward 3 resident Alison Reynolds, who has skied across Norway to raise awareness for PKU, a condition her daughter was born with, the cost is a personal one she and her family have faced for the past 19 years. Her daughter drank her medical formula four times a day growing up, she told the committee. “It went with her to school field trips, camp, every overnight trip, many playdates, and it’s what kept her growing and thriving.” The formula provided 80 percent of her daughter’s nutrition needs and kept her safe from the effects of a perilous protein, Reynolds said. For diseases such as PKU, a formula may be the sole form of treatment. 

A Fix: But it’s not so simple, said Philip Barlow, Associate Commissioner at DC Department of Insurance, Securities, and Banking. The city would need to calculate and offset costs associated with medically necessary foods for folks who receive advanced premium tax credits under the Affordable Care Act. Also, doctors and dieticians may or may not order medically necessary foods from a healthcare supplier, and even among healthcare suppliers, costs vary. Coverage can get tricky.

Barlow recommended the bill give the mayor rulemaking authority to identify particular foods for coverage; he garnered support from Ward 7 Councilmember Vince Gray, who presided over the meeting. At-Large Councilmember Christina Henderson wondered whether this bill would be as frustrating as that of another kind of edible: With medical marijuana legislation, the Council had to go back again and again every time they needed to make a change; rulemaking could help, she said.

While the bill will need to be remodeled to address Barlow and Henderson’s concerns, all attendees did agree on one thing: the Medically Necessary Food Coverage Act is necessary.

“For some of these patients, medical foods are just as important to them as insulin is to a diabetic,” Mary Jo Strobel, executive director of the American Partnership for Eosinophilic Disorders, told the committee and fellow witnesses, who nodded their heads.

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