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Karin C. | California | Patient Age: 14 | Disorder: Phenylketonuria

My son has been on Phenex-2 since he was diagnosed with phenylketonuria (PKU) at 7 days old. It has been his most consistent and most reliable form of nutrition his entire life. We have tried to expand beyond this formula and he has rejected all others. Due to the closure of the Abbott plant, we are at a point where he will be forced to take in another form of formula or become undernourished. The stress of not having access to his main source of nutrition, combined with other medical costs is taking a toll on our family.

We are grateful to have insurance through our jobs, and yet our co-pay for formula is still $3,000 per year, and for his low protein medical foods, it is $500-3000/ year. This is in addition to the $45,000 co-pay for medication he takes daily that allows him to ingest 30 grams of protein rather than 6 grams, which you can imagine is critical in the life of an active, growing 14 year old. These expenses are apart from ongoing heath related expenses that I have a cancer survivor.

We must pass the Medical Nutrition Equity Act this year and we must support families who cope with the day-to-day realities of rare diseases. Our labor to care for loved ones and our selves is often done in silence and often invisible. Let the crisis of the national formula shortage and the contamination of the Abbott plant shine a light on what support is needed for the day to day survival of members of the rare disease community.