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.
T, Age 5
EOSINOPHILIC DISORDERS · FPIES · Texas
Annual cost: $8400
My son was diagnosed with Food Protein Induced Enterocolitis Syndrome when he was 11 months old. Following scopes, he was later ...
My daughter, Brittany, was born with PKU and we were able to provide her with the nutritional products that she needed to avoid significant brain development problems. Unfortunately, that is not the case for all children and adults in the US.
Brittany
Maine · Phenylketonuria (PKU)
The Medical Nutrition Equity Act (MNEA) has been re-introduced in Congress. We really need to push hard to get this passed, so I am ...
Employer plan claims that metabolic formula is considered food supplement / baby formula and is excluded from plan.
Ishaq, Age 5
3-Hydroxy-3-methyglutaric aciduria · Maryland
Annual cost: $3600
Not only helps us but all other families who need to provide safe calories for our children. Employer plan claims that metabolic ...
Insurance won't cover my son's formula unless he's tube-fed.
Elijah, Age 7
EOSINOPHILIC DISORDERS · Texas
Annual cost: $3600
The Medical Nutrition Equity Act would mean my 7 year old son could get proper nutrition he needs. He is currently 45lbs at 7.5 years ...
I am no longer able to afford medical food coverage such as probiotics and none of my providers can ever get it approved.
Sarina
California · COLITIS
Annual cost: $1920
I am no longer able to afford medical food coverage such as probiotics (VSL DS #3), and none of my providers can ever get it approved. ...
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.
Coverage for medical foods would mean everything.
Noah, Age 6
New York · SBS
Annual cost: $12000
Coverage for medical foods would mean everything. We could pay our bills and not live paycheck to paycheck. Blended food is not ...
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.
Annabelle, Age 4
Phenylketonuria (PKU) · South Carolina
Annual cost: $600
Having medical food coverage would expand our daughter’s ability to try new and different foods. Medical foods such as rice, ...
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.
Justin, Age 22
Immunoglobulin E & non-Immunoglobulin E-mediated allergies to food proteins · Nebraska
Annual cost: $24000
Our 22 year old son is about to age out of coverage for his formula. He is allergic to everything, except this one formula and ...
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.
Liam, Age 1
Massachusetts · Phenylketonuria (PKU)
Annual cost: $3600
Right now my husband and I are financially stable and we can afford the almost $100 per month we spend on medical formula and the ...
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.
Zoey, Age 19
Pending
Annual cost: $6600
Zoey is our granddaughter whom we have parented since she and her twin brother (who does not have PKU) were 3 years of age, parents ...
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 ...
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
Evan, Age 8
Florida · Maple syrup urine disease
Evan was born with MSUD and we were lucky that TRICARE covered his formula and supplements until his transplant. At the time, they did ...
At 1.5 years old she weighed 14 pounds and had g-tube surgery. She's 3 now and has never eaten food.
Danielle, Age 3
Florida · SBS
Annual cost: $12000
Our beautiful happy and energetic three year old daughter Danielle was born at 35 weeks New Year’s Day 2016. She was diagnosed at ...
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.
Tyton, 9 months
Phenylketonuria (PKU) · Utah
Annual cost: $2400
Finding out your little one has a life changing condition at birth can be a whirlwind. Self Discipline is something that is mandatory ...
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.
Lauren, 7 months
Immunoglobulin E & non-Immunoglobulin E-mediated allergies to food proteins · Minnesota · Pending
Annual cost: $3600
Medical Foods Coverage would greatly reduce our out of pocket cost especially at daycare, having to provide her formula for the next ...
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.
Will, Age 14
Phenylketonuria (PKU) · Washington
Annual cost: $4200
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 ...
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.
Ellis, Age 12
Phenylketonuria (PKU) · Tennessee
Annual cost: $4200
We have been fighting insurance and coverage since Ellis was diagnosed. It is very time consummating and difficult to work with ...
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.
Julian, Age 13
Immunoglobulin E & non-Immunoglobulin E-mediated allergies to food proteins · New Jersey
Annual cost: $9600
Coverage would mean that i could really offer my son enough nutrition per day instead of rationing. He does eat about 6 foods, but ...
Told we were “too rich” to qualify for medical foods coverage but if we liquidated all our assets we could qualify for limited help.
Dylan, Age 5
EOSINOPHILIC DISORDERS · Ohio
Annual cost: $18000
Diagnosed at 14 months. Husband was unemployed at the time, I was working. Went through every agency in Ohio for assistance on cost. ...
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 ...
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 ...
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 ...
