Sebastian, Age 25
Medicare always denying coverage, constant. Medicare is very poor. EOB’s need improvements. I have a son that needs medical nutrition and without it he would have passed away years ago. Medicare always denying coverage, constant. Medicare is very poor. EOB’s
Read moreCamden, Age 10
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
Read moreLucas, age 18 months
While we are fortunate that wic and insurance cover Lucas’s formula because of his medical necessity as well as my persistence with insurance and Drs filing out the right things, etc, many families have a lot of trouble finding help
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Grayson, Age 2
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,
Read moreSienna, Age 22
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
Read moreLouie, Age 3
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
Read moreElijah, Age 7
Insurance won’t cover my son’s formula unless he’s tube-fed.
Read moreZoë and Stella
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
Read moreRaelyn, Age 3
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
Read moreLeah, Age 12
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
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Gannon, 8 months
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
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Sutton, Age 4
My FPIES son could only tolerate 1 food (Quinoa) for 3 years without projectile vomiting or having hospitalization level diarrhea. We are burned out trying to get elemental formula covered. We need uniformity on how to ensure children get the
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