Pat and Issac

Hi, I’m Pat and this is my son, Isaac, and husband/caregiver, David. Isaac is high functioning Autistic. I’m Type 2 diabetic. My husband recently has been hospitalized for pulmonary edema. My family is in and out of hospitals a lot for our individual health issues.

My son and I also have a rare inborn error of metabolism called a Urea Cycle Disorder that requires us to eat a low protein diet with fruits and veggies. Unfortunately, my employer’s health insurance (high deductible via the state of Texas) is very expensive with it leaving me $600 dollars per paycheck left for rent, bills, gas and food. My paycheck does not go far. Additionally, my home state of Texas does not recognize our rare disease so we cannot qualify for prescription medical foods. It would be wonderful to afford medical low protein foods to supplement our daily diet.

I am a state employee with TRS Aetna. I have been with this coverage for close to 5 years now and witnessed how greedy it has become. This year all employees have to be on the HD1 high deductible coverage. I have to be on HD1 as my son and I are catastrophic with a simple cold or flu hospitalizing us. Aetna has always fought us with 100% coverage as we have a 3rd party, Good Days from CDF who help pay the annual OOP and Deductible. This year, they refuse to have any prescription cost, copay or 3rd party grant go towards the medical portion. They honored this in previous years. We have to go to a hospital ER with an in house lab for routine blood ammonia labs. Unfortunately this year, TRS Aetna decided to penalize us by saying only urgent care is covered and if we go to an ER for our blood labs in a crisis, we will be charged 500 copay. Urgent care cannot do blood labs for ammonia stat in 7 min on ice. Our daily medication for son and I costs 6K a month. Texas also refuses to acknowledge Urea Cycle Disorder (Ornithine Transcarbamylase Deficiency) for prescription medical foods but other types of UCD are covered.



Other Texas residents who rely on medical foods

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