By State

Hannah, age 18

I actually have two daughters with PKU. My grocery and monthly expenses is double what the average family pays. Medical bills have made it hard to provide for basic needs for my family.

Because of the cost of medical nutrition, we sacrifice many other things. We are blessed to have always been able to afford medical foods, but as these children get older and need to provide for themselves, it is likely they

Hi, I’m Jack and I’m 23 years old, still on my parent’s insurance. This is the first year my formula has been covered through my parent’s insurance, but we haven’t received a bill yet, so we’ll see how it works

Lauren, 7 months

Medical Foods Coverage would greatly reduce our out of pocket cost especially at daycare, having to provide her formula for the next year will be hundreds to thousands of dollars.

I have two daughters, three years and almost one month. We didn’t have a diagnosis for my oldest for 15 months. Her leg broke walking in the grass from lack of nutrients. When we got a diagnosis and were able

I am a full time lawyer working 60-70 hour weeks with two little children at home (3 yo and 12 months). I travel for work and often attend meetings where I cannot eat any of the catered food. Even going

This is Lillian. She is almost 3 and still drinks formula because she has an eosinophilic disorder. Lillian has Eosinophilic Esophagitis. It’s a pretty rare autoimmune disorder that when she has certain foods, makes eosinophils (a type of white blood

Marcella was diagnosed with multiple food allergies in 2016. She is allergic to soy, peanuts, tree nuts,fish, shellfish, along with a slew of environmental allergies. We have lost count of how many times we have had to administer epinephrine, hospital

Coverage for medical nutrition is dictating our decisions on treatment. We cannot afford to pay for the formula so are delaying treatment because of the fact that it is not covered. I fully believe that insurance not paying for something

My kids have been on their diet their entire lives (we have three kids with PKU) and now at a crucial time (maternal age), she can not obtain her medical food. She’s is tired, has headaches, feels like she is

Having three children with PKU is an unbelievable blessing. We had never heard of PKU before Zach was born and just a few days after he was born, we were thrown into the deep end of the PKU life. When

Caroline was born 7 weeks premature. She stopped breathing several times almost dying. Neocate Jr is the only think she eats to survive. Cigna refuses to cover it. And its $800 out of pocket. Employer switched to Cigna who refuses

Prior to switching to my husbands employer benefits we paid $125 per month out of pocket for our daughters formula. When my husband brought home his welcome packet with insurance information in it we immediately flipped to the section about

Because our employer plan is self-funded, and we have no other plan options through the company, I have no coverage for even formula needed to maintain a healthy and functional life. Our family is in debt because of the out

Coverage would give our family peace of mind. My youngest daughter, Hailey, has PKU. Everyday, she is required to drink a very specific formula. This will be required every day, for the rest of her life. A can of powdered

Liam has struggled with GI issues, food avoidance, and maintaining growth since he was born, but the issues intensified once we tried to start introducing solid foods. His pediatrician told me time and time again that we just needed to

Coverage would ease a huge financial burden for our family. Not only is the formula expensive, but so is the specialized diet Avery requires due to so many severe conditions. Due to the fact that Avery supplements diet with Elecare

I am a city worker. The free insurance didn’t cover feeding tube supplies or formula. So I had to switch to an insurance I had to pay for each check. If this bill were passed I could switch back to

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 medical coverage for formula, and so my parents had to pay out of pocket for

Because of the cost of desperately required essential nutrition (allergen free toddler formula) I have chosen to continue breastfeeding my son. This has been a sacrifice of not only time (as a full time working mother) but also limiting my

Thirteen years ago our Daughter was born with Phenylketonuria (PKU). Since then for our family of seven we have begun the upward financial battle to afford for the proper care and treatment of our child’s inherited metabolic disorder. Many insurance

I was born in 1990 with PKU. My parents were told to expect severe disabilities. We need these medical foods for our everyday lives. The prices of these foods are outrageous $11.49 for ONE box of medical pasta. These medical

I was diagnosed with PKU late, at thirty days. I have some issues, mainly short term memory, due to my late diagnosis. I graduated from high school last year and just finished my first year of college. Without my medical

Ally was diagnosed at ten days with brain growth affecting diet based treatment PKU. She has been a resident of SC since she was six weeks old. Thanks to medical food and strict diet adherence she is a bright, lively,

Hi, I am only 5 years old now and my parents struggle to provide the right food for me for my special diet. Coverage would mean now and when I get older I wouldnt have to pay for my food

By State

Hannah, age 18

Jackson, Sawyer, and Holland

Jack, Age 22

Lauren, 7 months

Aliza (3) and Vayda (newborn)

Nicole

Lillian, Age 2

Marcella, Age 15

Cody, Age 6

Kacie

Zach, Madie, and Kai (14, 11, and 5)

Caroline, age 18 months

Elsie, Nearly 2

Liza

Hailey, Age 1

Liam, Age 5

Avery, Age 3

KE, Age 16

Jessica

Benjamin, Age 1

Charlotte, Age 13

Amber

Reagan

Alexandria, Age 16

Saif, Age 5