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Brandi W. | Texas | Patient Age: almost 15 | Disorder: PKU

We are beyond stressed with this unnecessary disruption of our daughter’s lifeline. She has been on Phenex since May 1997, the month she was born. She has tried other formulas, tablets, bars, powders. She wants her Phenex 2. She is sick, she only wants her Phenex2. She is stressed over school. She wants her Phenex2. She is depressed, she wants her Phenex 2. Everyone at my work knows if she is grumpy or spacey. She needs her Phenex 2. They dubbed it her happy juice.

We have 4 cases left. I am dreading the transition. It will happen at the end of school when she is finishing up her 9th grade year and starting a new job. This is not fair to her

She is approaching the age of starting Palynziq. She does not want to give up her Phenex 2. Even if she can eat regular food with protein.

Then you have the insurance fight. They won’t cover it without a fight from us. After a month of fighting, they will only cover Phenex 2 unflavored. Nothing else. We have a rider on our insurance policy specific for this coverage on this formula. I know I just had my yearly fight to get them to cover it. I don’t want to fight them again.

I see no reason why FDA is withholding lifelines that have nothing to do with the manufacturing of a baby formula. A metabolic formula is a LIFELINE. You can not cut a person off cold turkey that has been a daily source of nutrition for over 1 plus years.