As a nutrition expert, it should be up to me, the family and the healthcare team to decide on how best to treat these children and if nutrition is the ideal treatment, then it should be included as part of the child's covered treatments. It is frustrating to have to delay or change care if nutrition therapy is not covered. This can worsen illness and also cause undue stress and harm to the child and their family.
I am a pediatric gastroenterologist and treat children with a variety of digestive conditions that require medical nutrition. I often see patients whose digestive conditions mandate that they be on special diets or supplements and yet these diets cannot be afforded. A.B. is a 9-year-old boy who was born with a condition called ‘jejunal atresia.’ […]
As a provider, I know what is best for these patients and when covered, the results (i.e. improved absorption, reduced eosinophils, improved growth and weight gain) are nothing short of incredible.
As a pediatric gastroenterologist, I take care of children with diseases of the digestive tract. Medical nutrition is often the treatment of choice for these conditions. Insurance denial is particularly frustrating in the case of a motivated child who intends to consume the prescribed nutrition by mouth but is told that he/she would require a feeding tube to have this therapy covered by insurance.
Vikram Christian, MD
EOSINOPHILIC DISORDERS · Minnesota · Provider Stories
As a pediatric gastroenterologist, I take care of children with diseases of the digestive tract. Medical nutrition is often the ...
Contact your Representatives and Ask Them To Co-Sponsor HR 2501
Legislation has been introduced in the U.S. House of Representatives that will require all payers — Medicaid, Medicare, Federal ...
Remington, Age 18
EOSINOPHILIC DISORDERS · Florida
Annual cost: $25200
Remington was diagnosed with eosinophilic esophagitis as a toddler. By the time he was 3 years of age, it became clear that food was ...
James, Age 12
Alabama · EOSINOPHILIC GASTROINTESTINAL DISORDER (EGID)
James DeLano is a 12-year-old boy who has lived his life with rare, chronic disease. As a young child, James was diagnosed with an ...
When patients' mental health deteriorates because they cannot follow their diet, they often lose their job and get incredibly frustrated with the system.
Sue, Michigan Dietitian
Inborn Errors of Metabolism and Conditions on the RUSP · Michigan · Provider Stories
There are so many patients (especially PKU patients) who would like to improve their health status, including mental health, but ...
Phenylketonuria (PKU) · Washington
Annual cost: $6000
The amount of medical debt my family has had to trudge through, during my 43 years of living with PKU, has been financially crippling. ...
Our clinic's desire to bring the best possible care and outcomes to our patients is directly related to their ability to get necessary medical foods. Many who are not able to get medical foods are not able to follow their restricted diets, leading to poor outcomes and disease associated morbidities.
Ashley, Utah Metabolic Nurse Practitioner
Inborn Errors of Metabolism and Conditions on the RUSP · Provider Stories · Utah
Medical food practice affects our practice in several ways. First, and foremost, our desire to bring the best possible care and ...
Abbey, Age 8
Connecticut · Phenylketonuria (PKU)
Annual cost: $9600
Abbey is such an awesome person. She has a heart of gold, great listener and works so hard at everything she does. She loves to dance ...
A young couple with a child with PKU in my care made the difficult decision to move to another state and region where they would be able to depend on full medical food and formula coverage and to afford the cost of just one child with PKU.
Sarah, Washington DC Nurse Practitioner
Inborn Errors of Metabolism and Conditions on the RUSP · Provider Stories · Washington DC
Staff time alone is the most major barrier. We are fortunate to have a Metabolic Clinic Manager to keep on top of all the insurance ...
My biggest frustration with the lack of coverage of medical foods is that these are NOT foods like those that we purchase from our grocer, they ARE medical treatments just like medications. The party with the condition CANNOT be healthy without them in the exact same manner that a person with diabetes type 1 cannot live without insulin.
Jennifer, Idaho Dietitian
Idaho · Inborn Errors of Metabolism and Conditions on the RUSP · Provider Stories
As a clinical dietitian in a clinic setting more than 75% of my time was spent managing covering for medical foods. These tasks ...
The biggest frustration as a provider is knowing that many patients are not receiving the care they need to manage their conditions. The second biggest frustration is that even when an insurance “covers” medical foods, it may still not be obtainable since many ‘in-network’ distributors will not supply the needed products.
Stephanie, Florida Dietitian
Florida · Inborn Errors of Metabolism and Conditions on the RUSP · Provider Stories
Coverage of medical foods is a large part of my practice in both my time-effort and my care recommendations for patients. For every ...
Louisiana · Phenylketonuria (PKU)
Annual cost: $6000
I have to be on Medicaid because I can not afford to get insurance on my own or thru my employer and it is very difficult to make ends ...
Declan, Age 11
Delaware · Phenylketonuria (PKU)
Annual cost: $24000
When I was eligible for the Affordable Care Act, I “made too much money” since child support is added in for income for DE ...
Arizona · Phenylketonuria (PKU)
Annual cost: $12000
Our family is unique, in that I have PKU as well as our four adopted sons. With no guarantee of insurance coverage, I fear that my ...
Canaan, Age 2
Georgia · Very long-chain acyl-CoA dehydrogenase deficiency
Annual cost: $10512
Canaan is a thriving, active 2-year-old boy with a rare metabolic condition called VLCAD. He lives with his parents in Georgia. He was ...