My son was a week old when we got the news that he has PKU. I had no clue what this was and didn’t realize just how serious it ...
Our son was diagnosed with FPIES at around 7 months of age. He is intolerant or allergic to upwards of 40 foods. Even at the current ...
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.
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 ...
What would having had coverage for medical nutrition meant to me/my family? It feels like an insurmountable task to even try to answer ...
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 ...
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 was born with MSUD and we were lucky that TRICARE covered his formula and supplements until his transplant. At the time, they did ...
I am one of the oldest patients in the PNW. My parents were told to put me in an institution but they said no and found a pediatrician that put me in the first clinical trial for treatment of PKU.
Hello, I am a 50 year old Phenylketonuria patient at the UW Medical Center. I am one of the oldest patients in the PNW. My parents ...
When Krew turns 6 and is no longer covered by the state metabolic program, we will have to seriously consider moving to a state with ...
Jane’s formula cost out of pocket for EEN was approximately $300 per month. Her team of health care providers attempted to obtain insurance coverage but was denied even after appeals were attempted.
Jane is a happy and energetic 7-year-old child who lives with her parents and two siblings in Chicago, IL. She was diagnosed with ...
My daughter was diagnosed with a genetic inborn error of protein metabolism at 15 months of age. Since that time, our daily life has ...
Looking at this brother and sister pair, you don’t see anything besides two happy kids. Thankfully, Zay and Ellie are happy and ...
I am currently a foster mom to a 2 year old with PKU. We live in the state of NC where medical food is not covered. His food is very expensive & without coverage, it is nearly impossible to buy.
I am currently a foster mom to a 2 year old with PKU. We live in the state of NC where medical food is not covered. His food is very ...
Insurance covers formula (so many cans a month) and also covers up to $5000 of food during the fiscal year July-April. If during the ...
If Brandon was able to get his medical food covered we would take advantage of ordering from Cambrooke foods company more often. His ...
Meet Adler! He is an amazing little boy that lives in rural Missouri with his Mom and Dad. Adler was diagnosed with PKU shortly after ...
My state gives us formula covered which is the biggest blessing but my daughter is just now getting ready to start foods. I am a ...
Marcella was diagnosed with multiple food allergies in 2016. She is allergic to soy, peanuts, tree nuts,fish, shellfish, along with a ...
When Garrett was born at 9 lbs 4 oz, we could not have been more thrilled to have a such a fat, happy baby! When we received the call ...
I have two daughters. Only the younger one has PKU. We struggle to find foods that Isabel can eat. Medical foods are incredibly ...
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.
Coverage of medical foods is a large part of my practice in both my time-effort and my care recommendations for patients. For every ...
We would be absolutely grateful if our daughter Zoey’s Medicaid insurance would cover her medical food, not just her formula. I ...
Coverage for medical nutrition for myself would mean freedom from worry and security that I will continue to be my best self. Without ...
My greatest worries are what happens if my husband’s job comes to an end and we can’t afford the medical formula/foods or can’t afford insurance. More importantly, what happens when my son has to start taking care of these expenses himself.
The cost of food and formula limits many things besides medical foods themselves.
Because of the high cost of formula and food, ...
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 ...
Hi, I am only 5 years old now and my parents struggle to provide the right food for me for my special diet. Coverage would mean now ...