This week I drank my first cup of fancy Starbucks coffee ever. I have the metabolic disorder #Phenylketonuria (PKU), which makes it so that I can’t break down the amino acid Phenylalanine found in food high in protein, more on that here. This includes cow’s milk and is why I hadn’t tried any of those macchiato confections – because let’s be real they’re straight up sugar.
Besides, I’m not a big coffee drinker and wouldn’t want to drink straight black coffee. However a couple years ago Starbucks added Almond Milk and Coconut Milk as substitute options, both are MUCH lower in protein than cows milk and are PKU friendly.
Once I could try one of Starbucks’ fancy coffees I delayed it because on some level I was scared to. I had thought of Starbucks as something I couldn’t enjoy for so long I was in denial that it wasn’t so anymore. Now I understand what all the fuss is about.
I’ve been wanting to take my advocacy for PKU to the next level for a while but the idea of reaching out to a politician was a bit scary. What would I say? Would they even take me seriously?
Last week I emailed one of my Senators to ask if I could speak with her about sponsoring the Medical Nutrition Equity Act. The Act would provide public and private insurance coverage for physician prescribed medical foods – medical formulas (my PKU shake) and low protein modified foods for children and adults with PKU and other inborn errors of metabolism.
This is incredibly important because the medical formulas and foods ensure people with PKU, such as myself, are able to function at their full capacity instead of becoming mentally disabled. Without insurance the cost of these medical formulas and foods runs approximately $12,000- $15,000 per year.
Right now coverage differs state to state and many families with a loved one with PKU find it incredibly challenging to get the help they need.
Yesterday afternoon I got an email from a senior advisor to Senator Gillibrand and I will be speaking with the advisor about the act soon. I’m excited and a little intimidated but I’ll let you know how it goes!