My biggest frustration with the lack of coverage of medical foods is that these are NOT foods like those that we purchase from our grocer, they ARE medical treatments just like medications. The party with the condition CANNOT be healthy without them in the exact same manner that a person with diabetes type 1 cannot live without insulin.
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Stephanie, Florida Dietitian
The biggest frustration as a provider is knowing that many patients are not receiving the care they need to manage their conditions. The second biggest frustration is that even when an insurance “covers” medical foods, it may still not be obtainable since many ‘in-network’ distributors will not supply the needed products.
Read moreNicholas, Age 3
Having medical foods coverage would lessen the burden of worrying about the special foods our son will need as he grows up.
Read moreCorey, Age 26
Turning 26 and navigating through my own insurance was a nightmare.
Read moreChris
I stopped taking the formula because it’s $2000/month out of pocket and I couldn’t afford that. Later that year I visited my clinic, where I found that my vitamin levels were critically low because I didn’t have access to the formula. I essentially went the whole year without any kind of formula or protein supplement.
Read moreEzra, Age 3
The formula is very expensive!…My Grand-daughter and her husband both work and with all the bills cannot afford the formula (which is relevant in this disease)
Read moreMark, Age 61
So far Mark’s medical nutrition has been covered after the out of pocket maximum is met (this year it is $7,450). But we never know year after year if it will be or not and January is always stressful not knowing if will be or not.
Read moreNew York Teen, 17
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.
Read moreGian, Age 2
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.
Read moreZoey, 15 months
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.
Read moreSarah, Age 50
I am one of the oldest patients in the PNW. My parents were told to put me in an institution but they said no and found a pediatrician that put me in the first clinical trial for treatment of PKU.
Read moreJane, Age 7
Jane’s formula cost out of pocket for EEN was approximately $300 per month. Her team of health care providers attempted to obtain insurance coverage but was denied even after appeals were attempted.
Read moreIan, Age 12
On top of the cost of formula, I have to buy specialty foods amounting to about $200 per month plus regular grocery store items for my son, fresh fruits and vegetables. Plus groceries for rest of family. My son will then age out of coverage per current policies. I worry about what will happen, will he have an occupation that will allow him to manage the cost?
Read moreJoey
Even in Massachusetts, to get coverage for formula and food it is an absolute nightmare collaborating with insurance companies, pharmacies and clinics. I have fear each month that there will be an issue with something and I will not be able to get food or formula for my son because of a paperwork mistake or miscommunication between providers.
Read moreKathy, Age 55
I’m almost 55 with PKU need I say more… okay was a sample for Kuvan and Lanephex. Amount others like 1st Pku camps!
Read moreElliott, 1 month
To have Elliott’s formula and medical nutrition (low protein foods) covered by insurance would be a huge relief. The formula is extremely expensive and we haven’t even gotten to the foods yet, but I’m sure those are not cheap either.
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