Sue, Michigan Dietitian

There are so many patients (especially PKU patients) who would like to improve their health status, including mental health, but cannot get formula. PKU patients cannot eat a normal diet and MUST use formula to achieve maximum health status or risk issues with depression, anxiety, and executive functioning due to high phenylalanine levels in the brain. Private insurance companies in Michigan are not very good with covering formula, especially if it is used orally. The process is cumbersome for both medical providers and patients and insurance companies do not equitably reimburse suppliers for these expensive formulas. When patients’ mental health deteriorates because they cannot follow their diet, they often lose their job and get incredibly frustrated with the system.

I spend a lot of time writing letters of medical necessity and calling insurance companies to try and get these medical formulas covered. It is a very frustrating process trying to navigate insurance companies’ phone system and to get the right person on the phone.

We had a 37 year old male who came to our clinic to get back on his PKU diet which included using formula every day. He had complained of issues with his memory and also depression. He had a good job, but his private insurance refused to cover his formula. This man ended up losing that job due to his mental health issues. If he had been able to get his formula covered by insurance, he likely would have been more successful with keeping his job.

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The Medical Nutrition Equity Act will provide key support for those Americans who rely on medical foods to survive and thrive.