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 ...
Andrew, Age 18
Texas · Tyrosinemia
Annual cost: $9600
My mother has worked as many as 5 jobs concurrently to maintain employer-provided insurance and has CONSTANTLY fought to keep me on a ...
Maeve, Age 8
Phenylketonuria (PKU) · Texas
Annual cost: $3600
As all parents who experience it, we were overwhelmed once we got the call, at 5 days of age, that our daughter Maeve had been ...
A. Jay
EOSINOPHILIC DISORDERS · Texas
Annual cost: $6000
It would end the never ending anxiety of worrying about whether I can feed my son who has Eosinophilic esophagitis. My insurance will ...
Our daughter must take a medication twice a day, drink medical formula and eat special medical foods in order to stay healthy. We are extremely lucky that our insurance covers a large portion but so many families are not as lucky as we are. Medical nutrition IS NOT AN OPTION.
Zoey, 15 months
New York · Tyrosinemia
Annual cost: $1200
When our daughter was diagnosed with an Inherited Metabolic Disorder at 10 days old I remember the frantic whirlwind of calls, emails, ...
Emalynn
Phenylketonuria (PKU) · Virginia
Annual cost: $5040
When Emalynn was born and diagnosed with PKU, we had no idea what to expect or think. Luckily we were blessed with a bright happy 3 ...
Clayton, Age 4
Ohio · Phenylketonuria (PKU)
Annual cost: $5040
Having the medical nutrition covered by our insurance would grealty imporve the options and the cost of the food that Clayton would ...
To have Elliott's formula and medical nutrition (low protein foods) covered by insurance would be a huge relief. The formula is extremely expensive and we haven't even gotten to the foods yet, but I'm sure those are not cheap either.
Elliott, 1 month
Michigan · Phenylketonuria (PKU)
Annual cost: $7200
Elliott is just over 1 month old and we were unaware that we were carriers for PKU. Living in Michigan, we recently learned that our ...
Ronan, Age 2
FPIES · Ohio
Annual cost: $9600
My 2 year old son Ronan has FPIES. He was born healthy but quickly lost to much weight within 2 days after being born and was failure ...
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 ...
Marcella, Age 15
EOSINOPHILIC DISORDERS · Oklahoma
Annual cost: $4320
Marcella was diagnosed with multiple food allergies in 2016. She is allergic to soy, peanuts, tree nuts,fish, shellfish, along with a ...
Lisa, Age 6
Indiana · Phenylketonuria (PKU)
Annual cost: $3000
We adopted Lisa last year. Prior to that she was in Florida. Due to the low amount covered in Florida Lisa was on a very limited diet. ...
Mason, Age 2
Iowa · Phenylketonuria (PKU)
Annual cost: $12000
Mason is our second child and our only with PKU. Like many others we had never heard of PKU until our son was diagnosed through the ...
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 ...
Having medical foods coverage would lessen the burden of worrying about the special foods our son will need as he grows up.
Nicholas, Age 3
Michigan · Phenylketonuria (PKU)
Annual cost: $12000
Having medical foods coverage would lessen the burden of worrying about the special foods our son will need as he grows up. While we ...
Jessica, Age 36
Maryland · Phenylketonuria (PKU)
Annual cost: $1200
I am 36 years old and was diagnosed with PKU when I was 14 days old. At the time may parents were told that I could be taken off the ...
Owen
Phenylketonuria (PKU) · Utah
Annual cost: $36000
Medical nutrition coverage would make an enormous difference to our entire family. We spent years in school to provide a good living ...
Linkyn, 18 months
California · Phenylketonuria (PKU)
My daughter was born with PKU, a rare metabolic disorder. Right now, we are lucky to have insurance cover her formula and medical ...
Jack, Age 22
Kansas · Phenylketonuria (PKU)
Annual cost: $6000
Hi, I’m Jack and I’m 23 years old, still on my parent’s insurance. This is the first year my formula has been ...
Walker, Age 5
EOSINOPHILIC DISORDERS · Georgia
Annual cost: $3000
We have many bills due to traveling out of state to help our 5 year see doctors that specifically help his condition. By not paying ...
Keira and Victoria, Ages 5 and 7
Methylmalonic acidemia (cobalamin disorders)
Annual cost: $6000
This bill would allow my girls to never have to worry about their formula. Our insurance says it’s covered but we need to meet our ...
Les
Phenylketonuria (PKU) · Texas
Annual cost: $6000
These medical foods and formulas are not “optional” or “nice to have” for those of us with PKU andsimilar ...
Lyndsee, Age 13
EOSINOPHILIC DISORDERS · North Carolina
Annual cost: $20400
My daughter, Lyndsee, was diagnosed in January 2016 with a rare disease, eosinophilic esophagitis. Therefore, she has to live on a ...
Aiden and Aaron, Ages 5 and 3
Phenylketonuria (PKU) · Washington
Annual cost: $2400
I have two boys with Phenylketonuria, ages 5 and 3. We moved recently from California to Washington state. In California we had state ...
Joe
Georgia · Phenylketonuria (PKU)
Annual cost: $2400
When Joe was 3 weeks old, coverage of his PKU medical formula was denied by our employer provided insurance. We couldn’t believe ...
