By the time my son was properly diagnosed, he was extremely sick and we were relieved to find an elemental formula that could provide calories and nutrition he so desperately needed. However, we were stunned by the cost on top of already steep medical bills. The stress of feeding him was enormous.
Read moreQuotes
Ishaq, Age 5
Employer plan claims that metabolic formula is considered food supplement / baby formula and is excluded from plan.
Read moreElijah, Age 7
Insurance won’t cover my son’s formula unless he’s tube-fed.
Read moreKatherine, RD
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.
Read moreTyler, MD from Idaho
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
Read moreCaroline, RD
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.
Read moreNoah, Age 6
Coverage for medical foods would mean everything.
Read moreAnnabelle, Age 4
Having medical food coverage would expand our daughter’s ability to try new and different foods. Her diet is supervised by a metabolic team of healthcare professionals at a specialized genetics/metabolism clinic in our state. This is not just for fun or because she wants to eat a certain way, This is to help her grow and develop properly.
Read moreJustin, Age 22
My husband has been trapped at that job his entire career because of the formula coverage for our son, that we can’t afford to walk away from. We have 3.5 years before he ages out of coverage. It is $24,000/yr, for life. The one formula that works for him is not covered by medicaid in our state. We are almost retirement age and plan to work as long as we can to pay for formula.
Read moreLiam, Age 1
Children without access to formula and medical food struggle to keep their levels stable and deal with a myriad of issues from attention issues to brain damage.
Read moreZoey, Age 19
Zoey was detected on the newborn screen and placed on diet within 10 days of life. She has used her special protein milk for years and is currently a lovely young girl, attending Southern Oregon University in her second year. The need for medical foods and special protein has been imperative for her.
Read moreVikram Christian, MD
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.
Read moreEvan, Age 8
I am aware that we are some of the lucky ones in that we have great medical coverage via TRICARE. Others should be afforded the same opportunity for coverage
Read moreDanielle, Age 3
At 1.5 years old she weighed 14 pounds and had g-tube surgery. She’s 3 now and has never eaten food.
Read moreTyton, 9 months
When I think of our little guy and how important it is for him to follow a structured diet, I don’t want financial limitations to be the reason of failure.
Read moreLauren, 7 months
Medical Foods Coverage would greatly reduce our out of pocket cost especially at daycare, having to provide her formula for the next year will be hundreds to thousands of dollars.
Read moreWill, Age 14
I am 14. I need my formula to live and grow. I am an athlete and a good student. My formula and low protein foods are critical for my brain and body.
Read moreEllis, Age 12
We have spend hundreds of hours on the phone, writing letters and working with her doctors for our insurance to provide the medical nutrition needed for Ellis to stay at her healthiest.
Read moreJulian, Age 13
My employer, though great for everything else, is self-Insured. Due to this fact they are not required to cover my 13 year old’s formula.
Read moreDylan, Age 5
Told we were “too rich” to qualify for medical foods coverage but if we liquidated all our assets we could qualify for limited help.
Read moreSue, Michigan Dietitian
When patients’ mental health deteriorates because they cannot follow their diet, they often lose their job and get incredibly frustrated with the system.
Read moreAshley, Utah Metabolic Nurse Practitioner
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.
Read moreSarah, Washington DC Nurse Practitioner
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.
Read more