Patients and Providers for Medical Nutrition Equity Patients and Providers for Medical Nutrition Equity

PATIENTS AND PROVIDERS FOR MEDICAL NUTRITION EQUITY

Christopher, Age 9

Christopher is a thriving, active 9 year old boy with a rare metabolic condition called LCHADD. He lives with his parents in Atlanta. He was the first baby with LCHADD to be picked up on the Expanded Newborn Screening in 2008, and has done extremely well due to medical nutrition.

When Christopher was diagnosed with LCHADD in 2008, we felt relief when the doctors explained that his condition was treatable, and that they expected him to do well on his medical formula, Lipistart. We were devastated when we received our first rejection letter from our insurance company, denying coverage of Christopher’s formula. The fear of not knowing how my husband and I would be able to pay $697 a month or $8,364 a year was very real. With my husband’s teacher salary, our household income was just above the qualifications for state help. Luckily, after appealing the denial with a letter from our geneticist, our insurance provider decided to cover the expense of Christopher’s formula. Unfortunately, over the next several years we received yearly denials and had to coordinate with the State Health Benefit program and insurance company to have continued access to formula coverage.

It is so important that children like Christopher have access to their medical formula because it not only helps them survive, but to thrive! Access to medical formula REDUCES the cost for insurance companies by reducing hospitalizations. Christopher is currently attending elementary school, and over the last four years has fought off stomach bugs, strep throat, and colds WITHOUT being hospitalized. This is directly due to his consumption of his medical formula. He was able to keep the formula in his body when he couldn’t keep down food. Without immediate calories and nutrition during illness, children with LCHADD can spend a week or more in the hospital to prevent kidney failure. The cost of his medical formula for an entire year is a lot less expensive than just one hospitalization!

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