We have 2 kids with PKU, so having coverage for medical nutrition would mean the world to us. My husband switched jobs for better ...
Stepping out of the Blue – (Bear with me for a moment, this will all make sense in the end)
Where it all began: I located a new ...
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 ...
Coverage for medical nutrition is dictating our decisions on treatment. We cannot afford to pay for the formula so are delaying ...
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 ...
My son began drinking Neocate junior at 12 months. It was not covered by our insurance. All formula is excluded from out plan because ...
Kennedy was diagnosed with PKU at 5 days old. Left untreated this disorder can lead to serious brain damage. While we are very ...
I have two daughters. Only the younger one has PKU. We struggle to find foods that Isabel can eat. Medical foods are incredibly ...
It would mean so much to have the medical nutrition equity act passed. I have a diagnosis of homocystinuria which was discovered very ...
Passing this law would mean a lot more money to go around. Better health for me which makes me better for my family.
Passing this law would mean a lot more money to go around. Better health for me which makes me better for my ...
Our beautiful baby boy Aidan was born last July and shortly thereafter diagnosed with PKU. Once we learned he could grow and develop ...
My daughter’s formula is currently covered. This formula allows my daughter’s brain and body to remain healthy. It allows her to ...
My daughter has EoE allergies and IgE allergies and is already a tiny girl. At 17 yrs she only weighs 100lb. We are still trying to ...
My name is Teresa Boyette I live in Kinston NC I was born overseas where nb knew bout pku tills American soldier discovered it.i ...
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 ...
Our family has been fortunate enough to have very good insurance coverage through an employer which provides 90% coverage for medical ...
I am a voting 48 year old PKU adult male who is self reliant and is a major source of income in my house hold. I have a career, build/ ...
So far Mark's medical nutrition has been covered after the out of pocket maximum is met (this year it is $7,450). But we never know year after year if it will be or not and January is always stressful not knowing if will be or not.
So far Mark’s medical nutrition has been covered after the out of pocket maximum is met (this year it is $7,450). But we never ...
Emmalyn graced us with her presence 10 and 1/2 years ago at 35 weeks gestation weighing in at 5 lbs, 7 ozs. and 18 inches long. Our ...
The formula is very expensive!...My Grand-daughter and her husband both work and with all the bills cannot afford the formula (which is relevant in this disease)
The formula is very expensive!…My Grand-daughter and her husband both work and with all the bills cannot afford the formula ...
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.
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 ...
When my son, Draegen, was younger, he was on Medicaid. It covered his formula, but only a very specific kind. He ended up burnt out on ...
I began my last semester of college excited for the year ahead, doing normal things for a college senior, thinking about life after ...
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 ...
I have two boys with Phenylketonuria, ages 5 and 3. We moved recently from California to Washington state. In California we had state ...