Phenylketonuria (PKU) – Page 2 – Patients and Providers for Medical Nutrition Equity

Supporting the Medical Nutrition Equity Act, S1194, HR2587

These are people with Phenylketonuria (PKU) whose lives are sustained by medical nutrition.

Their average annual cost for medical foods is $4656 per person.

All Conditions
Conditions
Pending

Colorado, Phenylketonuria (PKU)

Breeze, 6

Colorado, Phenylketonuria (PKU)

Colorado | Phenylketonuria (PKU) | Annual cost: $2400

My daughter Breeze, was born with a metabolic disease, called PKU. PKU is a rare genetic disease. She is 1 of 15,000 PKUers living in the United States. We have medical insurance. I have spent hours on the phone with insurance about PKU medical coverage. I have filed formal complaints with our insurance about coverage. Insurance does not pay for...

New York, Phenylketonuria (PKU)

My greatest worries are what happens if my husband’s job comes to an end and we can’t afford the medical formula/foods or can’t afford insurance. More importantly, what happens when my son has to start taking care of these expenses himself. Please, help!

New York Teen, 17

New York, Phenylketonuria (PKU)

New York | Phenylketonuria (PKU) | Annual cost: $7200

The cost of food and formula limits many things besides medical foods themselves. Because of the high cost of formula and food, we’ve had difficulty affording supplemental educational support for our son. These costs limit what we have available to maintain our home properly. We’ve had to put off costly repairs due to not having...

Ohio, Phenylketonuria (PKU)

Lisa

Ohio, Phenylketonuria (PKU)

Ohio | Phenylketonuria (PKU) | Annual cost: $30000

Our state has a state funded program for the formula. The Kuvan my daughter takes we are getting assistance through NORD (charity organization) based on our family size and joint income. Any medical food that we order are out of pocket expenses. This would be helpful for our daughter to assure appropriate caloric intake....

Phenylketonuria (PKU), Texas

Anthony, 1

Phenylketonuria (PKU), Texas

Phenylketonuria (PKU) | Texas | Annual cost: $9000

Earlier this year we took custody of our grandson Anthony. He was diagnosed after birth with PKU. He has lived with us since birth, learning to care for someone with PKU has been challenging. My husband works out of town, prior to Anthony we had planned for him to take a job at home,...

Michigan, Phenylketonuria (PKU)

Piper, 2

Michigan, Phenylketonuria (PKU)

Michigan | Phenylketonuria (PKU) | Annual cost: $12000

I had never heard of PKU until my two-year-old granddaughter was diagnosed. Fortunately, the state of Michigan pays for her medical formula, but nothing towards all the low protein foods that are required. Medical formula is covered by state of Michigan, any other low protein foods are not. I am retired but work part...

New Jersey, Phenylketonuria (PKU)

Cooper, 10 months

New Jersey, Phenylketonuria (PKU)

New Jersey | Phenylketonuria (PKU)

We are lucky that my husband works for Google and has some of best health Insurance you can get but most are not so lucky. We had to request a GAP exception to get the foods covered which requires clinics review and is only approved for a 3 month period meaning we will have...

Arizona, Phenylketonuria (PKU)

The Smiths

Arizona, Phenylketonuria (PKU)

Arizona | Phenylketonuria (PKU) | Annual cost: $12000

Our family is unique, in that I have PKU as well as our four adopted sons. With no guarantee of insurance coverage, I fear that my children will one day be forced into a situation similar to that they were born into: their birth families lived in a country where medical care was not...

Maryland, Phenylketonuria (PKU)

Alice, 1

Maryland, Phenylketonuria (PKU)

Maryland | Phenylketonuria (PKU) | Annual cost: $1800

Medical nutrition coverage has significantly reduced the cost and strain on our family's income for our daughter's food. We spend hours making her special recipes a week and approximately $150 extra a month in order to buy specific gluten free and vegan products for groceries. I cannot begin to express how much medical formula...

Iowa, Phenylketonuria (PKU)

Hailey

Iowa, Phenylketonuria (PKU)

Iowa | Phenylketonuria (PKU) | Annual cost: $12000

Meet Hailey...our second child and first PKUer. We thought having one child was expensive but having another with PKU is an entirely different ball game. See, Hailey is doing well; thriving in all aspects of life with much credit due to newborn metabolic screening and a quick diagnosis of PKU. Because we were able...

Phenylketonuria (PKU), Texas

Draegen, Age 18

Phenylketonuria (PKU), Texas

Phenylketonuria (PKU) | Texas | Annual cost: $6000

When my son, Draegen, was younger, he was on Medicaid. It covered his formula, but only a very specific kind. He ended up burnt out on it and it became more and more difficult to get him to drink it. The medical food was another problem. We had a monthly grant from the state....

California, Phenylketonuria (PKU)

Gavin, Age 2.5

California, Phenylketonuria (PKU)

California | Phenylketonuria (PKU) | Annual cost: $15000

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...

California, Phenylketonuria (PKU)

Robert, Age 11

California, Phenylketonuria (PKU)

California | Phenylketonuria (PKU) | Annual cost: $18000

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 $50. We go through 14 cans/month. That’s over a full week of my pay...

Ohio, Phenylketonuria (PKU)

Christiana, Age 11

Ohio, Phenylketonuria (PKU)

Ohio | Phenylketonuria (PKU)

We are fortunate that in the State of Ohio our daughter's medical formula is covered. Because she is a responder to Kuvan, we have been able to rely less on specialty low-phenylalanine foods but do still purchase low protein pasta. We also still need to purchase gluten free items in the grocery store which...

Colorado, Phenylketonuria (PKU)

Emma, Age 10

Colorado, Phenylketonuria (PKU)

Colorado | Phenylketonuria (PKU) | Annual cost: $4800

When Emma was first born my husband worked at Avaya and we had Aetna. They refused to cover her medical formula despite appeals with letters of necessity from her Doctors. My husband changed jobs and second company insurance also refused to cover. When he got job offer at Cisco we finally had employer insurance...

Illinois, Phenylketonuria (PKU)

Denver, Age 10

Illinois, Phenylketonuria (PKU)

Illinois | Phenylketonuria (PKU)

My son Denver appears to be a normal ordinary 10 year old boy until he wants something to eat, gets sick, or his PHE levels are too high. When he wants something to eat it must be low protein therefore he can’t have meats, dairy, white flour, and etc. All of his food is...

Georgia, Phenylketonuria (PKU)

Emily, Age 6

Georgia, Phenylketonuria (PKU)

Georgia | Phenylketonuria (PKU) | Annual cost: $18000

Our Emily was diagnosed at 9 days old with Phenylketonuria (PKU). During the last seven years of her life we have had insurance completely deny her medically necessary formula after the age of 12 months. We have appealed, fought, had countless meetings and phone discussions, and even persuaded our provider to include phenylketonuria/inborn errors...

North Carolina, Phenylketonuria (PKU)

Oliver, 10 months

North Carolina, Phenylketonuria (PKU)

North Carolina | Phenylketonuria (PKU) | Annual cost: $4800

My son was a week old when we got the news that he has PKU. I had no clue what this was and didn't realize just how serious it was until it was explained to me as do most people. For months I was in denial. My son can't eat protein?...How is that possible?...

North Carolina, Phenylketonuria (PKU)

I'm a foster mom trying to provide for a child with PKU.

Gian, Age 2

North Carolina, Phenylketonuria (PKU)

North Carolina | Phenylketonuria (PKU) | Annual cost: $4800

I am currently a foster mom to a 2 year old with PKU. We live in the state of NC where medical food is not covered. His food is very expensive & without coverage, it is nearly impossible to buy. His mother will not be able to afford to buy this food for him...

Kansas, Phenylketonuria (PKU)

Drake, Age 3

Kansas, Phenylketonuria (PKU)

Kansas | Phenylketonuria (PKU) | Annual cost: $6000

Our insurance covered the medical beverage for one year and then stopped. This was so terrible because we had no notice and the insurance company acted like it wasn’t necessary. They cover the Kuvan medication which gives him more protein tolerance but not the medical beverage he needs to get nutrition. Having coverage for medical...

Phenylketonuria (PKU), Texas

Maeve, Age 8

Phenylketonuria (PKU), Texas

Phenylketonuria (PKU) | Texas | Annual cost: $3600

As all parents who experience it, we were overwhelmed once we got the call, at 5 days of age, that our daughter Maeve had been diagnosed with a rare metabolic disorder requiring a strict medical diet in order to prevent irreversible brain damage. As the ones responsible for preventing this and keeping her healthy,...

Phenylketonuria (PKU), Tennessee

Isla, Age 5

Phenylketonuria (PKU), Tennessee

Phenylketonuria (PKU) | Tennessee | Annual cost: $6000

Having coverage for medical foods that my daughter requires is necessary for her success of her diet management! Without the only known management for PKU (low protein diet) my daughter would incur severe neurological issues and inability to complete daily tasks. With coverage of medical nutrition would alleviate the unnecessary stressors of the only...

Kansas, Phenylketonuria (PKU)

Jackson, Age 6

Kansas, Phenylketonuria (PKU)

Kansas | Phenylketonuria (PKU) | Annual cost: $3600

We reside in Kansas. Our son Jackson was born June 12, 2012, 5 days later the State of Kansas called with positive results for PKU from Jackson’s newborn screening test. I initially worked company that covered medical nutrition until Jackson turned 12 months. The co-pay was still high, once Jackson turned 1, they stopped...

Phenylketonuria (PKU), Washington

I was able to carry two successful pregnancies to term and have to very healthy children as a result of having coverage of medical food coverage. Without medical food coverage, my life would not have been the same.

Michelle

Phenylketonuria (PKU), Washington

Phenylketonuria (PKU) | Washington | Annual cost: $3000

I am very fortunate to have great coverage for medical food and formula. This has not always been the case. When I was out of school but doing my internship I had to rely on samples of formula to get me through. I was no longer eligible to be on my mother's insurance. It...

Maryland, Phenylketonuria (PKU)

Jessica, Age 36

Maryland, Phenylketonuria (PKU)

Maryland | Phenylketonuria (PKU) | Annual cost: $1200

I am 36 years old and was diagnosed with PKU when I was 14 days old. At the time may parents were told that I could be taken off the diet at age 18 and that I might not be able to have children as it would be unsafe for them. As I grew...

Missouri, Phenylketonuria (PKU)

Adler, Age 3

Missouri, Phenylketonuria (PKU)

Missouri | Phenylketonuria (PKU) | Annual cost: $7200

Meet Adler! He is an amazing little boy that lives in rural Missouri with his Mom and Dad. Adler was diagnosed with PKU shortly after birth. With the help of his Mom, Dad and extended family his PHE levels have been well maintained and in treatment range. When Adler was born he had private...