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.
As a Registered Dietitian who works in a pediatric outpatient gastroenterology and nutrition office, I routinely work with children ...
Hi, I’m Pat and this is my son, Isaac, and husband/caregiver, David. Isaac is high functioning Autistic. I’m Type 2 ...
My name is Breanna and I am 23 years old. Luckily, I am still on my parents insurance and plan on staying on it until I can no longer. ...
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 is just over 1 month old and we were unaware that we were carriers for PKU. Living in Michigan, we recently learned that our ...
I will begin with saying there are others that are in far greater need of medical nutrition coverage than myself. I have been brought ...
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.
Coverage would mean that i could really offer my son enough nutrition per day instead of rationing. He does eat about 6 foods, but ...
I was diagnosed with PKU late, at thirty days. I have some issues, mainly short term memory, due to my late diagnosis. I graduated ...
Our sweet Gavin’s future depends on this crucial coverage. Without insurance coverage for his food & formula, we would be unable ...
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.
I am a Registered Dietitian for GI disorders. I spend probably 10-20% of every week working on ordering medical foods for patients ...
It scares me to think about our daughter not having access to her medical formula. This isn’t an option for her, her life depends ...
Coverage for medical nutrition would be a huge blessing to me and my family, and also many other individuals with PKU especially ...
We spend every day planning and preparing. Not only what our daughter will eat today and in the week ahead but also for her future. ...
For now while she is a baby our insurance covers some of her formula, but none of her medically necessary supplements and none of the ...
If there were no issues with getting medical formulas and medical foods, the stress of worrying would go away. As a child, we had no ...
If Brandon was able to get his medical food covered we would take advantage of ordering from Cambrooke foods company more often. His ...
Our daughter has even told her dad and I that she thinks at this point, she will choose not to have children due to the cost of her medical foods!
Our 25 year old daughter has always done really well with her PKU diet, especially throughout her schooling! We were able to receive ...
Isabelle has Classic PKU. She is 2.5 years old and can have 3 grams of natural protein per day. For context, one 8 oz glass of milk ...
When patients' mental health deteriorates because they cannot follow their diet, they often lose their job and get incredibly frustrated with the system.
There are so many patients (especially PKU patients) who would like to improve their health status, including mental health, but ...
These medical foods and formulas are not “optional” or “nice to have” for those of us with PKU andsimilar ...
We are a poor family. Aside from food stamps we don’t have anything else to help with regular food let alone medical food. over ...
Asher is my happy, smart, funny, rambunctious four year old. He loves to play with tractors, his sister, swim, and eat! He loves ...
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.
Having medical food coverage would expand our daughter’s ability to try new and different foods. Medical foods such as rice, ...
It’s very important having coverage for medical nutrition. We could not afford to pay out of pocket and have no private insurance. ...
We are lucky that my husband works for Google and has some of best health Insurance you can get but most are not so lucky. We had to ...
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.
We have been fighting insurance and coverage since Ellis was diagnosed. It is very time consummating and difficult to work with ...