We have three beautiful children, two of which have PKU. We spend over $120 a month on medical formula, foods, and medication for PKU. ...
Hi, I’m Pat and this is my son, Isaac, and husband/caregiver, David. Isaac is high functioning Autistic. I’m Type 2 ...
We adopted our beautiful daughter Zoe three months ago from China. We did extensive research on PKU and prepared ourselves the best we ...
When I moved to the West Coast by myself in 2014, I had to learn everything on my own like finding a clinic and handling coverage. I ...
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 ...
The amount of medical debt my family has had to trudge through, during my 43 years of living with PKU, has been financially crippling. ...
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.
Medical food practice affects our practice in several ways. First, and foremost, our desire to bring the best possible care and ...
Abbey is such an awesome person. She has a heart of gold, great listener and works so hard at everything she does. She loves to dance ...
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.
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 ...
My biggest frustration with the lack of coverage of medical foods is that these are NOT foods like those that we purchase from our grocer, they ARE medical treatments just like medications. The party with the condition CANNOT be healthy without them in the exact same manner that a person with diabetes type 1 cannot live without insulin.
As a clinical dietitian in a clinic setting more than 75% of my time was spent managing covering for medical foods. These tasks ...
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 ...
Having medical foods coverage would lessen the burden of worrying about the special foods our son will need as he grows up.
Having medical foods coverage would lessen the burden of worrying about the special foods our son will need as he grows up. While we ...
My insurance company recently denied coverage for my daughter’s formula to treat her PKU. They said she can only have formula ...
Turning 26 and navigating through my own insurance was a nightmare.
Turning 26 and navigating through my own insurance was a nightmare. NYS Medicaid is a blessing but not sure how long I can stay on ...
When our daughter was born, our two employer-provided insurances refused to cover her condition.
When our daughter was born, our two employer-provided insurances refused to cover her condition. One insurance was through the Ct. ...
When Norah was just 5 days old, we received a call from our clinic saying that Norah had something called PKU. At the time, we had ...
I stopped taking the formula because it's $2000/month out of pocket and I couldn't afford that. Later that year I visited my clinic, where I found that my vitamin levels were critically low because I didn't have access to the formula. I essentially went the whole year without any kind of formula or protein supplement.
In 2017 I started working at my current employer. In January 2018 I filled out the paperwork with Cambrooke Therapeutics to have them ...
My daughter has a milder form of PKU and therefore does not need as much formula to live a healthy life. However, as she gets older ...
Mabel was diagnosed with the metabolic disorder, Phenylketonuria (PKU) at birth. She is thriving with the help of her metabolic ...
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. ...
I have to be on Medicaid because I can not afford to get insurance on my own or thru my employer and it is very difficult to make ends ...
When I was eligible for the Affordable Care Act, I “made too much money” since child support is added in for income for DE ...
I was diagnosed with Homocystineuria at age 3, (1974) when I rubbed Trisodium Phosphate (paint Thinner) into my eyes. They originally ...
I got pregnant while I was in high school and never finished. I was alone in my pregnancy and until he was 3 months old. I don’t ...
What would having had coverage for medical nutrition meant to me/my family? It feels like an insurmountable task to even try to answer ...