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 moreBy State
Elijah, 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
Read moreGannon, 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
Read more
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
Read moreEleanor, Age 7
Nora was born tox positive to several drugs and social services moved her to my home to be with her bio sibling for adoption. She has had severe GERD and food allergies from birth. She continues to have Failure to
Read more
Leonard, Age 3
I have two sons and only Leo has PKU. We maintain a low protein diet for Leo, but due to the high cost of low protein medical foods, we spend a lot of our time cooking and finding alternative meals
Read moreMelissa, Age 26
I am a 26 year old with PKU. I am pregnant with my second child. Maternal PKU is so important because being off diet can cause harm to my unborn child. Having coverage for my medical nutrition would be financial
Read more
Katherine, RD
As a nutrition expert, it should be up to me, the family and the healthcare team to decide on how best to treat these children and if nutrition is the ideal treatment, then it should be included as part of the child’s covered treatments. It is frustrating to have to delay or change care if nutrition therapy is not covered. This can worsen illness and also cause undue stress and harm to the child and their family.
Read moreTyler, MD from Idaho
I am a pediatric gastroenterologist and treat children with a variety of digestive conditions that require medical nutrition. I often see patients whose digestive conditions mandate that they be on special diets or supplements and yet these diets cannot be
Read moreCaroline, RD
As a provider, I know what is best for these patients and when covered, the results (i.e. improved absorption, reduced eosinophils, improved growth and weight gain) are nothing short of incredible.
Read moreNoah, Age 6
Coverage for medical foods would mean everything.
Read moreBethany, Age 19
Our BCBS does cover the Medical Formula for my daughter and does reimburse for low protein modified foods but this is never without a struggle. Michigan BCBS has their own form to submit for reimbursement for modified foods however it
Read moreAnnabelle, Age 4
Having medical food coverage would expand our daughter’s ability to try new and different foods. Her diet is supervised by a metabolic team of healthcare professionals at a specialized genetics/metabolism clinic in our state. This is not just for fun or because she wants to eat a certain way, This is to help her grow and develop properly.
Read moreJustin, Age 22
My husband has been trapped at that job his entire career because of the formula coverage for our son, that we can’t afford to walk away from. We have 3.5 years before he ages out of coverage. It is $24,000/yr, for life. The one formula that works for him is not covered by medicaid in our state. We are almost retirement age and plan to work as long as we can to pay for formula.
Read moreLiam, Age 1
Children without access to formula and medical food struggle to keep their levels stable and deal with a myriad of issues from attention issues to brain damage.
Read more