Ashlynn, Age 5

Having coverage for medical nutrition would mean the world to our family. Instead of feeling like I have to creatively figure out how to buy normal foods at the store I could order more freely and feel more confident. My

Read more

Kris

Having access to low protein nutrition and food is essential to my overall health but primarily my brain and cognitive function. Particularly, heading toward age range 50+. As a first generation PKU patient, I have sustained brain damage as a

Read more

Sarina

I am no longer able to afford medical food coverage such as probiotics and none of my providers can ever get it approved.

Read more

Eleanor, Age 7

Nora was born tox positive to several drugs and social services moved her to my home to be with her bio sibling for adoption. She has had severe GERD and food allergies from birth. She continues to have Failure to

Read more

Katherine, RD

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.

Read more

Deckard, Age 1

My son has classic PKU and his food options are very limited. We rely heavily on medical foods to fulfill his dietary needs. It is a struggle to have the insurance company provide coverage for the medical formula and foods.

Read more

Lincoln, Age 2

Lincoln was diagnosed with a severe milk protein allergy at 2 weeks of age after blood was visibly seen in his stool. His pediatrician changed his formula from Similac to Alimentum RTF (I had a double mastectomy) and this continued

Read more

Alexander, Age 23

My son has eosinophilic gastritis and esophagitis. His foods are very limited and he basically lives off chicken breast and rice. Even with vitamins he is too sick and weak to hold a job. We are trying to get him

Read more

Gavin, Age 2.5

Our sweet Gavin’s future depends on this crucial coverage. Without insurance coverage for his food & formula, we would be unable to afford our house payment. This coverage is essential to ensuring that he has as bright a future as

Read more

Robert, Age 11

It would relieve a lot of stress and tension in our household. Having to pay out of pocket for my son’s formula has brought me to tears more than once. I make $17/hour. A can of his formula costs about

Read more

Linkyn, 18 months

My daughter was born with PKU, a rare metabolic disorder. Right now, we are lucky to have insurance cover her formula and medical food, but I worry about the future. If we did not have this insurance, we would not

Read more

Luke, Age 4

My son is only 4. He has a whole life of this expensive cost of life, that he had no choice to live, to hover over him forever. He has such a low daily tolerance ( 260 mg of phe

Read more

Nico, 15 months

My son who is 15 months old was born with PKU. We have Cigna insurance which covers ZERO low protein medical foods and only covers a small amount of his medical formula. We do not qualify for a state run

Read more

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 context, one 8 oz glass of milk has 8 grams of protein – 2.5 times Isabelle’s daily allowance. Isabelle relies

Read more

Carter, Age 5

Our family has been fortunate enough to have very good insurance coverage through an employer which provides 90% coverage for medical foods. Out insurance covers 90% of medical foods however we have to get the providers approved by the insurance

Read more

Ashlynn

My insurance provides coverage of Ashlynn’s PKU metabolic formula, ONLY after we have met her deductible. They cover NO medical foods for her which are extremely expensive. They do not fully cover her mandatory blood tests, only partial until we

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