Inborn Errors of Metabolism and Conditions on the RUSP

Sarah

At first my dad’s Connecticut Carpenters insurance refused to cover my condition so he took a job with the Milford Board of Education and I have had excellent coverage ever since. I can only imagine how different life would have

Kendall

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 was very little know about how to treat PKU back then and only

Having coverage for medical nutrition would mean I would have access to life-saving foods and formulas without ever having a lapse in coverage. I wouldn’t have to worry about my insurance deciding what’s best for my treatment. It means I

Yazmin was four days old when she was diagnosed with mild PKU. She’s been allowed most things except for meat, she still requires formula daily. We work effortlessly daily to try and provide meatless options for our girl which has

Our adopted son was diagnosed with isovaleric acidemia at birth. This is an incurable disorder that can be managed with a low-protein diet and supplementation of essential amino acids with a special formula, manufactured only by Abbott Laboratories. Without this

Grayson needs to take an injection of a specialty compounded form of B12 called Hydroxocobalamin. Our insurance through my husbands employment and Medicaid do not cover compounded medication. Without this medication he would suffer from seizures, brain atrophy, vision loss,

When my daughter Sienna was 3 months old she was diagnosed with a rare metabolic disease called mma-cblc. This disease prevents her from processing b-12 correctly or breaking down protein correctly. She was in the NICU & very critical before

Louie was diagnosed when he was one week old. We were told to expect motor delays, intellectual disability, and vision loss, assuming his health was well-controlled. We were using the standard recommended dose for his injection of compounded b12 until

We are extremely lucky to have identical twins that can share the trials and tribulations that come along with having PKU, but the cost to provide both of them with adequate medical foods was so intense, especially during the picky

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 “good” insurance, and yet they still they don’t see this as necessary. Having

We have an excellent private BCBS insurance policy, that we pay monthly for. As great as it is, it will not cover our daughters medical formula. This is a need, that comes accompanied by multiple letters of medical necessity from

Our employer sponsored healthcare does not cover any of the cost related to my son’s metabolic formula. Because of the cost we elected to enroll in our states children’s special illness healthcare program. It costs us about 150.00 a month

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 parents and two wonderful older brothers. I appeared to be just another little girl

Medical nutrition coverage would mean FREEDOM. Freedom from worry and the freedom to be able to make normal life choices such as what career to pursue and where to live without the fear of suddenly losing access to medical formula

I have phenylketonuria and am required to eat low protein foods and drink a formula supplement daily FOR LIFE. Without these items I would have severe mental affects from high Blood protein levels or malnutrition. Due to the pandemic, 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, we spend a lot of our time cooking and finding alternative meals

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 my unborn child. Having coverage for my medical nutrition would be financial

Having medical nutrition coverage would mean that I get to live my life without worrying. I’ve had to move to different states in the past for school and work, and my first thought is always, “Will my formula be covered?”.

Caroline, RD

pkunews

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.

Our BCBS does cover the Medical Formula for my daughter and does reimburse for low protein modified foods but this is never without a struggle. Michigan BCBS has their own form to submit for reimbursement for modified foods however it

Annabelle, Age 4

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.

Liam, Age 1

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.

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 outgrowing or recovering from. It is the most difficult and most expensive diet to

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 oz. is about 8 servings. Bread costs $13.99 a loaf. Kids love peanut

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 money that would benefit us as I am a single mother. I have never been

Inborn Errors of Metabolism and Conditions on the RUSP

Sarah

Kendall

Kurt

Yazmin, Age 2

Camden, Age 10

Grayson, Age 2

Sienna, Age 22

Louie, Age 3

Zoë and Stella

Raelyn, Age 3

Leah, Age 12

Gannon, 8 months

Kelly

Elyse

Heather

Leonard, Age 3

Melissa, Age 26

Melissa

Caroline, RD

Bethany, Age 19

Annabelle, Age 4

Liam, Age 1

Kerri

Alexander, Age 3

Denver, Age 12