T, Age 5

EOSINOPHILIC DISORDERS · FPIES · Texas
Annual cost: $8400

My son was diagnosed with Food Protein Induced Enterocolitis Syndrome when he was 11 months old. Following scopes, he was later ...

Brittany

Maine · Phenylketonuria (PKU)

The Medical Nutrition Equity Act (MNEA) has been re-introduced in Congress. We really need to push hard to get this passed, so I am ...

Ishaq, Age 5

3-Hydroxy-3-methyglutaric aciduria · Maryland
Annual cost: $3600

Not only helps us but all other families who need to provide safe calories for our children.  Employer plan claims that metabolic ...

Elijah, Age 7

EOSINOPHILIC DISORDERS · Texas
Annual cost: $3600

The Medical Nutrition Equity Act would mean my 7 year old son could get proper nutrition he needs. He is currently 45lbs at 7.5 years ...

Sarina

California · COLITIS
Annual cost: $1920

I am no longer able to afford medical food coverage such as probiotics (VSL DS #3), and none of my providers can ever get it approved. ...

Katherine, RD

California · Immunoglobulin E & non-Im­mu­no­glob­u­lin E-mediated allergies to food proteins · Medical or Surgical Condition of Malabsorption · Provider Stories

As a Registered Dietitian who works in a pediatric outpatient gastroenterology and nutrition office, I routinely work with children ...

Tyler, MD from Idaho

Idaho · Immunoglobulin E & non-Im­mu­no­glob­u­lin E-mediated allergies to food proteins · Medical or Surgical Condition of Malabsorption · Provider Stories

I am a pediatric gastroenterologist and treat children with a variety of digestive conditions that require medical nutrition. I often ...

Caroline, RD

Immunoglobulin E & non-Im­mu­no­glob­u­lin E-mediated allergies to food proteins · Inborn Errors of Metabolism and Conditions on the RUSP · Medical or Surgical Condition of Malabsorption · Minnesota · Provider Stories

I am a Registered Dietitian for GI disorders. I spend probably 10-20% of every week working on ordering medical foods for patients ...

Noah, Age 6

New York · SBS
Annual cost: $12000

Coverage for medical foods would mean everything. We could pay our bills and not live paycheck to paycheck. Blended food is not ...

Annabelle, Age 4

Phenylketonuria (PKU) · South Carolina
Annual cost: $600

Having medical food coverage would expand our daughter’s ability to try new and different foods. Medical foods such as rice, ...

Justin, Age 22

Immunoglobulin E & non-Im­mu­no­glob­u­lin E-mediated allergies to food proteins · Nebraska
Annual cost: $24000

Our 22 year old son is about to age out of coverage for his formula. He is allergic to everything, except this one formula and ...

Liam, Age 1

Massachusetts · Phenylketonuria (PKU)
Annual cost: $3600

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 ...

Zoey, Age 19

Pending
Annual cost: $6600

Zoey is our granddaughter whom we have parented since she and her twin brother (who does not have PKU) were 3 years of age, parents ...

Vikram Christian, MD

EOSINOPHILIC DISORDERS · Minnesota · Provider Stories

As a pediatric gastroenterologist, I take care of children with diseases of the digestive tract. Medical nutrition is often the ...

Evan, Age 8

Florida · Maple syrup urine disease

Evan was born with MSUD and we were lucky that TRICARE covered his formula and supplements until his transplant. At the time, they did ...

Danielle, Age 3

Florida · SBS
Annual cost: $12000

Our beautiful happy and energetic three year old daughter Danielle was born at 35 weeks New Year’s Day 2016. She was diagnosed at ...

Tyton, 9 months

Phenylketonuria (PKU) · Utah
Annual cost: $2400

Finding out your little one has a life changing condition at birth can be a whirlwind. Self Discipline is something that is mandatory ...

Will, Age 14

Phenylketonuria (PKU) · Washington
Annual cost: $4200

I am 14. I need my formula to live and grow. I am an athlete and a good student. My formula and low protein foods are critical for my ...

Ellis, Age 12

Phenylketonuria (PKU) · Tennessee
Annual cost: $4200

We have been fighting insurance and coverage since Ellis was diagnosed. It is very time consummating and difficult to work with ...

Dylan, Age 5

EOSINOPHILIC DISORDERS · Ohio
Annual cost: $18000

Diagnosed at 14 months. Husband was unemployed at the time, I was working. Went through every agency in Ohio for assistance on cost. ...

Ashley, Utah Metabolic Nurse Practitioner

Inborn Errors of Metabolism and Conditions on the RUSP · Provider Stories · Utah

Medical food practice affects our practice in several ways. First, and foremost, our desire to bring the best possible care and ...

Sarah, Washington DC Nurse Practitioner

Inborn Errors of Metabolism and Conditions on the RUSP · Provider Stories · Washington DC

Staff time alone is the most major barrier. We are fortunate to have a Metabolic Clinic Manager to keep on top of all the insurance ...