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!
6 thoughts on “Facing Fear: Starbucks and Senators Oh My!”
Thank you from the bottom of my heart for advocating for the whole PKU community. As the grandparent of a 20 month PKU toddler I am learning firsthand the importance of the Medical Nutrition Equity Act. Addie Girl, myself and our family thank you for facing your fear.
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Thank you for reaching out! I’m happy to take a step to support this Act which is so important for our community! I’m happy to hear about Addie too, she’s lucky to have such a wonderfully supportive family.
Came here from a post on your twitter page which piqued my curiosity as I had never heard of
PKU – now I have been educated.
I lost my beautiful niece Jasmine when she was 2yrs old ( won’t go into that ) so I have nothing but true admiration for you, not only in conquering adversity yourself but your actions with the Senator.
If you save only one life then you are a hero of mine.
Regards from Manchester UK
Hi Steve David,
I’m so sorry to hear about your niece! Thank you for taking the time to read this blog and leave such a heartfelt comment. There’s a lot of PKU activism yet to be done and some of it could indeed save lives. I hope so deeply to help make that happen.
Thank you for the reply.
If you need any support in the future & there’s anything I can do to help then give me a shout.
You can’t have too many friends.
Take care & keep safe,