Coverage for medical foods would mean everything.

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 ...

Kacie

New York · Phenylketonuria (PKU)
Annual cost: $5880

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 ...

Avery, Age 3

EOSINOPHILIC DISORDERS · FPIES · Immunoglobulin E & non-Im­mu­no­glob­u­lin E-mediated allergies to food proteins · New York
Annual cost: $2700

Coverage would ease a huge financial burden for our family. Not only is the formula expensive, but so is the specialized diet Avery ...

KE, Age 16

Immunoglobulin E & non-Im­mu­no­glob­u­lin E-mediated allergies to food proteins · New York

I am a city worker. The free insurance didn’t cover feeding tube supplies or formula. So I had to switch to an insurance I had to ...

Turning 26 and navigating through my own insurance was a nightmare.

Corey, Age 26

New York · Phenylketonuria (PKU)

Turning 26 and navigating through my own insurance was a nightmare. NYS Medicaid is a blessing but not sure how long I can stay on ...

Norah, Age 4

New York · Phenylketonuria (PKU)
Annual cost: $1800

When Norah was just 5 days old, we received a call from our clinic saying that Norah had something called PKU. At the time, we had ...

Emily, 11

New York · Phenylketonuria (PKU)
Annual cost: $3600

My insurance as a NYC public school teacher covers Emily’s medical formula only. But it is never easy. Every year there is a ...

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.

New York Teen, 17

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, ...

Ethan

New York · Tyrosinemia
Annual cost: $4800

Ethan has tyrosinemia and cannot eat a regular diet. He is restricted on the amount of protein he is able to consume on a daily basis, ...

Our daughter must take a medication twice a day, drink medical formula and eat special medical foods in order to stay healthy. We are extremely lucky that our insurance covers a large portion but so many families are not as lucky as we are. Medical nutrition IS NOT AN OPTION.

Zoey, 15 months

New York · Tyrosinemia
Annual cost: $1200

When our daughter was diagnosed with an Inherited Metabolic Disorder at 10 days old I remember the frantic whirlwind of calls, emails, ...

Josiah

Malabsorption due to liver or pancreatic disease · New York
Annual cost: $5400

Josiah is an adorable baby boy who lives with his parents and older sister Middletown, New York. His story starts like that of most ...

Hannah

Maple syrup urine disease · New York
Annual cost: $1440

We are self-insured. We have had to change health insurances every year for the past several years because the insurance company went ...

Passing this law would mean a lot more money to go around. Better health for me which makes me better for my family.

Laryssa

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

Passing this law would mean a lot more money to go around. Better health for me which makes me better for my ...

It would be such a relief for me to know that my daughter would always be able to afford her formula and medical food.

Juliana

New York · Phenylketonuria (PKU)
Annual cost: $2400

It would be such a relief for me to know that my daughter would always be able to afford her formula and medical food. My insurer will ...