At first my dad’s Connecticut Carpenters insurance refused to cover my condition so he took a job with the Milford Board of ...
My name is Kendall Temple Jr. and was born in 1966. I was one of every first people diagnosed with PKU in the state of Maryland. There ...
Having coverage for medical nutrition would mean I would have access to life-saving foods and formulas without ever having a lapse in ...
Yazmin was four days old when she was diagnosed with mild PKU. She’s been allowed most things except for meat, she still requires ...
Our adopted son was diagnosed with isovaleric acidemia at birth. This is an incurable disorder that can be managed with a low-protein ...
Grayson needs to take an injection of a specialty compounded form of B12 called Hydroxocobalamin. Our insurance through my husbands ...
When my daughter Sienna was 3 months old she was diagnosed with a rare metabolic disease called mma-cblc. This disease prevents her ...
Louie was diagnosed when he was one week old. We were told to expect motor delays, intellectual disability, and vision loss, assuming ...
We are extremely lucky to have identical twins that can share the trials and tribulations that come along with having PKU, but the ...
My daughter was born with PKU and our world was flipped upside down to say the least. I fought with our insurance company for months, ...
We have an excellent private BCBS insurance policy, that we pay monthly for. As great as it is, it will not cover our daughters ...
Our employer sponsored healthcare does not cover any of the cost related to my son’s metabolic formula. Because of the cost we ...
My name is Kelly and I was born on October of 1989. I appeared to be a perfectly healthy baby, the youngest of three, to loving ...
Medical nutrition coverage would mean FREEDOM. Freedom from worry and the freedom to be able to make normal life choices such as what ...
I have phenylketonuria and am required to eat low protein foods and drink a formula supplement daily FOR LIFE. Without these items I ...
I have two sons and only Leo has PKU. We maintain a low protein diet for Leo, but due to the high cost of low protein medical foods, ...
I am a 26 year old with PKU. I am pregnant with my second child. Maternal PKU is so important because being off diet can cause harm to ...
Having medical nutrition coverage would mean that I get to live my life without worrying. I’ve had to move to different states ...
As a provider, I know what is best for these patients and when covered, the results (i.e. improved absorption, reduced eosinophils, improved growth and weight gain) are nothing short of incredible.
I am a Registered Dietitian for GI disorders. I spend probably 10-20% of every week working on ordering medical foods for patients ...
Our BCBS does cover the Medical Formula for my daughter and does reimburse for low protein modified foods but this is never without a ...
Having medical food coverage would expand our daughter's ability to try new and different foods. Her diet is supervised by a metabolic team of healthcare professionals at a specialized genetics/metabolism clinic in our state. This is not just for fun or because she wants to eat a certain way, This is to help her grow and develop properly.
Having medical food coverage would expand our daughter’s ability to try new and different foods. Medical foods such as rice, ...
Children without access to formula and medical food struggle to keep their levels stable and deal with a myriad of issues from attention issues to brain damage.
Right now my husband and I are financially stable and we can afford the almost $100 per month we spend on medical formula and the ...
I was born with CPKU as well as my twin sister. We will die with CPKU too unfortunately. It isn’t anything you have a chance of ...
Imagine going to the store for peanut butter and the shelf tag says it’s $9.49 for 8 oz that will only last less than a week. 8 ...
Having coverage for the food and formula would be absolutely amazing for our family. I would be able to make a career move making more ...