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Brittany H. | Connecticut | Patient Age: 35 | Disorder: PKU

I am an adult with PKU and nurse practitioner in Genetics, and have seen the significant impact on many of our metabolic patients. Patient have struggled to transition to a different formula since it is not easy to just change formulas. We have also had issues with backorders of metabolic formulas from companies that are not Abbott, since the Abbott hold has caused issues with the supply of other formulas. This has caused such huge stress and panic for families that are trying to feed their babies, as well as older children, adults, and patients of all ages that rely on the formula for their main source of nutrition. Although I am also an adult with PKU, I am fortunate to currently not have to worry about formula due to being on an alternative therapy that is unfortunately not an option for all patients (Palynziq). However issues with access to formula was something my family and myself struggled with my entire life due to not having a federal mandate to cover metabolic formula. Additionally, this will delay me from having a family, since I would need to go off Palynziq and rely on metabolic formula for myself and the baby during pregnancy. But it is currently too much of a risk due to this situation, and it also makes me concerned about the future if there is not something done to prevent this issue from reoccurring and improve access to necessary formula.