Kaycee Childress doesn’t gloss over the details when she talks about the condition that made it impossible for her stepdaughter to eat almost any food.
Violent vomiting. Bloody diarrhea. Lethargy and exhaustion from getting so sick any time she consumed almost anything but a prescribed medical nutrition drink prescribed by her doctor.
“I want people to understand it,” Childress said of Food Protein Induced Enterocolitis Syndrome, or FPIES. “It’s like the worst case of food poisoning you’ve ever had.”
The problem is, medical nutrition isn’t covered by some insurers—at least, not if a patient doesn't also require a feeding tube—in the 15 states that don’t require the coverage. In states that have passed laws to ensure some level of coverage, the coverage is variable and exclude patients covered under federal programs.
In the case of Childress, who lives in Virginia, the out-of-pocket cost for her stepdaughter was about $14,000 a year before she began to grow out of her disorder. "This is a drug, not a supplement. It needs to be treated as such and insurance needs to pay for it," Childress said.
Childress will be among a group of more than 100 advocates expected to be on Capitol Hill on Tuesday pushing for support for the Medical Nutrition Equity Act, which was reintroduced by Rep. Jaime Herrera Beutler, R-Wash., and Rep. Jim McGovern, D-Mass.
The bipartisan legislation would require private insurers, as well as federal health programs like Medicare, Medicaid and the Children’s Health Insurance Program, to provide coverage for medically necessary nutrition when it is required to prevent severe disability and death. Tricare already changed its policy to cover medical nutrition for military members and their families regardless of how it is administered.
“For the thousands of children and adults who suffer from digestive and inherited metabolic disorders, their lives depend on having access to medically specialized foods and vitamins,” Herrera Beutler said. “This is a commonsense preventative solution that will lead to health care cost-saving, and more importantly, will save lives.”
There are multiple metabolic and digestive conditions that can require medical foods. For instance, she pointed out, children with Phenylketonuria, or PKU, can suffer severe brain damage, malnutrition, repeated hospitalizations and may be forced to rely on residential treatment, but with medical foods, can live normal lives.
Many insurers say they already cover medical nutrition for digestive or metabolic disorders.
The legislation comes in the midst of increased scrutiny by lawmakers around high drug prices and hospital bills. As Childress pointed out, insurance would cover her care if her condition landed her in the hospital, including any medical nutrition. But the moment she stepped out of the hospital, the formula would no longer be covered.
“It defies any fiscal or policy rationale,” said Camille Bonta, a policy consultant for the Patients & Providers Coalition for Medical Nutrition Equity. “You have insurance companies that say they will cover a very expensive biologic [drug], but they will not cover medical nutrition. We have example after example of insurance companies who will say ‘We cover medical nutrition. But we will only cover it if you surgically place a tube into the child’s gut to administer the formula.”
That requires the child to face an invasive procedure that comes with increased risk of infection, as well as increased costs from the procedure and the pump to administer the formula in addition to the actual cost of the formula, she said.
“What we’re saying is, if you’re going to cover it via that route of administration, or you’re going to cover an expensive biologic to treat that condition, why won’t you cover medical nutrition or formula if the kid could simply drink it?”