May 2019 Archives

Jack, Age 22

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

Contact your Representatives and Ask Them To Co-Sponsor HR 2501

pkunews

Legislation has been introduced in the U.S. House of Representatives that will require all payers — Medicaid, Medicare, Federal Employees Health Benefits Program, Children’s Health Insurance Program and private insurance — to cover medical nutrition for certain gastrointestinal conditions and

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

Month: May 2019

Jack, Age 22

Lauren, 7 months

Aliza (3) and Vayda (newborn)

Nicole

Lillian, Age 2

Marcella, Age 15

Cody, Age 6

Kacie

Contact your Representatives and Ask Them To Co-Sponsor HR 2501

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

Caroline, age 18 months

Elsie, Nearly 2

Liza

Hailey, Age 1