Sienna, Age 22

When my daughter Sienna was 3 months old she was diagnosed with a rare metabolic disease called mma-cblc. This disease prevents her from processing b-12 correctly or breaking down protein correctly. She was in the NICU & very critical before diagnosis. At one point I was told that she would not make it thru the night. A couple of days later she was diagnosed & finally given medications to treat her. This disease has a lot of complications & she must take many medications to manage it & the complications daily. One of her lifesaving medications she must have every day is an injection of a high concentrated compounded b-12 called hydrococobalamin. It is very expensive & has to be shipped on ice from Colorado. Two 10 ml vials only last 22 days & costs $230 . It is not covered under insurance even with the doctor appealing several times. This is not just a vitamin, but a lifesaving medication that she must take daily for the rest of her life. Without it she will die. This is only one of the medications she must take daily to help control the symptoms. She is now a 22 yr old young adult & her disease is well managed with her daily injections & medications. No one should have to fight their insurance company to have medical foods or medication covered. Her insurance doesn’t cover her compounded concentrated hydrococobalamin.

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