Test COnditions

Evan, Age 13

It is extremely difficult to provide my child with enough food to keep him healthy by keeping his blood phenylalanine levels at recommended levels and also keep him from being hungry.

Zoey

For now while she is a baby our insurance covers some of her formula, but none of her medically necessary…

Pamela

It would mean so much to have the medical nutrition equity act passed. I have a diagnosis of homocystinuria which…

Annabelle

Our daughter is on my husband’s insurance which we consider to be good medical insurance through UHC. We however did…

Juliana

It would be such a relief for me to know that my daughter would always be able to afford her formula and medical food.

Jessica

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!

Les

These medical foods and formulas are not "optional" or "nice to have" for those of us with PKU andsimilar metabolic…

John

I have avoided purchasing the medical food I needed because we can’t afford the food.

Addison, Age 4

My husband and I opted to pay more out of pocket each month, for our portion of the monthly insurance…

Sabastian

It is really hard to have a child with a metabolic disorder. I pay over $600.00 per month for insurance…

Laila, Age 12

Our family is very grateful that Laila's PKU was discovered with newborn screening. Once we were able to overcome the…

Walker

Having full and mandatory coverage would release a lot of strain on our annual budget and give us peace of…

Elliott, 1 month

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.

Kathy, Age 55

I’m almost 55 with PKU need I say more... okay was a sample for Kuvan and Lanephex. Amount others like…

Joey

Even in Massachusetts, to get coverage for formula and food it is an absolute nightmare collaborating with insurance companies, pharmacies and clinics. I have fear each month that there will be an issue with something and I will not be able to get food or formula for my son because of a paperwork mistake or miscommunication between providers.

Ian, Age 12

On top of the cost of formula, I have to buy specialty foods amounting to about $200 per month plus regular grocery store items for my son, fresh fruits and vegetables. Plus groceries for rest of family. My son will then age out of coverage per current policies. I worry about what will happen, will he have an occupation that will allow him to manage the cost?

Jennifer

I am a subscribed member to the largest employer sponsored health insurance program in the country, the Federal Employee Health…

Aiden and Aaron, Ages 5 and 3

I have two boys with Phenylketonuria, ages 5 and 3. We moved recently from California to Washington state. In California…

Carter, Age 5

Our family has been fortunate enough to have very good insurance coverage through an employer which provides 90% coverage for…

Laryssa

Passing this law would mean a lot more money to go around. Better health for me which makes me better…

Indigo, Age 5

It scares me to think about our daughter not having access to her medical formula. This isn’t an option for…

Hannah

We are self-insured. We have had to change health insurances every year for the past several years because the insurance…

Hailey, Age 17

My insurance pays for amino acid modified formula but will not provide any coverage for low protein foods. Low protein…

Jeff

MSUD powder is expensive – $2,775.00 for about 2 1/2 months of powder and is the mainstay of the diet for an MSUD person. Insurance always denies payment for other protein supplements such as valine and isoleucine which are recommended by the doctor.

Isabelle, Age 2.5

Isabelle has Classic PKU. She is 2.5 years old and can have 3 grams of natural protein per day. For…

The Medical Nutrition Equity Act will provide key support for those Americans who rely on medical foods to survive and thrive.