Shane Austerman [Iowa PKU Foundation]
I should also note that a full subcommittee hearing would also bring to light that the grant that currently exists for PKU patients used to be $2000 in FY 2008 and slowly dwindled to $0 in FY 2018. For FY 2021, it is $675. In today's dollars, the $2,000 from FY 2008 would be about $2500. The grant should be increased immediately to match the inflationadjusted FY 2008 amount. The fact this has been reduced has put many people's brains at risk. Rep Lundgren has failed to understand that it took significant advocating to get the $675 back after FY 2018.HF 50 should be passed as well. It would ensure people would get access to Medical Foods that prevent brain damage. Rep Lundgren has shared with others this bill doesn't cover enough people to make it worthwhile. One amendment needs to be added to this bill, it also should cover Medicaid patients. Due to Medicaid's unique structure, this bill inadvertently didn't cover Medicaid patients, who were provided insurance coverage until July of 2020. This needs to be remedied immediately and could be done by this bill. Rep Lundgren understands that no state law can mandate ERISA plans to cover these Medical Foods, but that is why both Senators Grassley and Ernst support a National Bill called the Medical Nutrition Equity Act (MNEA) that would mandate all insurance cover these Medical Foods. This inability to regulate ERISA selffunded plans is no reason not to pass this bill. The MNEA covers the same conditions and items HF 50 would if enacted.Thank you for your attention to this matter.
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