By Alex Garrett 3-26-25
It’s fitting to write this on the week of what would have been my the 107th birthday of my grandmother, Shirley Brockway, or Dee Dee, as we affectionately called her! She was quite the advocate for seniors and those underprivileged right up until she retired at 91 and beyond.
So when my mom and I went to Capitol Hill earlier this month, I think part of us kept alive that advocacy gene my grandmother had!
Sure it was fun to see our Nation’s Capitol building and the Washington Monument as well as sitting in the gallery of the House of Representatives . Yet, the whole point of being at the Digestive Disease National Coalition’s spring public policy forum took on much more meaning than just a trip to DC. It was that we were making a difference for those who , like me, have had a digestive disease some , most, or all of their lives!
There were four bills we pitched to Senate and Congressional staffers that , if passed, would help improve lives of those with digestive disease and i believe anyone dealing with healthcare issues! I talked with DDNC rep Dane Christianson about those bills here! (https://www.spreaker.com/episode/ddnc-washington-representative-dane-christiansen-recaps-spring-public-policy-forum-with-onelegupalex-3-12-25–64850169)
As we talked with Senate and House staffers , it became clear to me that averting a government shutdown is not about kicking the proverbial can down the road, it keeps vital funding going! That is why we reiterated how important it is to keep government open so people with healthcare needs can get the right resources ! In fact, the fact the shutdown was averted a week after visiting Senate Minority Leader Schumer’s office felt like an accomplishment and a a silver lining to the government dysfunction we see on our TVs!
While I first intended to represent the United Ostomy Association of America as one of a million with an ostomy , I also was able to touch on other issues I was facing like having been diagnosed with pancreatitis ! So to see someone like Bryce Zelig, also young, going through that made me feel less alone! He and his girlfriend Skylar are great advocates ! The support of funding for researching all of the issues I’ve dealt with hit home in my very short DC stay.
I also learned that we have been fortunate to get the same medical supplies monthly, while some get hung up in the insurance bureaucracy. It’s not right for an insurance company to decide which medical supplies should be covered because they are not the doctor! As I said in my meetings with these staffers, the NICU doctors didn’t haggle with insurance to save my life, so why should others ‘ healthcare be interfered with in their patient-doctor relationship. There should NOT be any interference!
I am so thankful to have met others who push through life with an ostomy and quite frankly kick ass, like Ashley Mann and hearing her story! This conference certainly made me feel less alone in my healthcare journey!
I thank the DDNC and UOAA advocacy manager Jeanine Gleba for welcoming us to DC and the with open arms to this forum and I recommend this to anyone who deals with digestive disease or knows someone who does! (https://ddnc.org/) https://www.ostomy.org/
Also, if finding a support system comes along with making a difference on Capitol Hill, it truly was a win -win for my mom , myself, and the Digestive Disease National Coalition!
Happy birthday week to the matriarch and an advocate for her family, Shirley ‘Dee Dee Brockway’ , we miss her! I felt her presence as well as my dad’s and the great Dr. Henry Viscardi’s advocacy legacy joined us in our trip to DC!
You can listen to my recap on One Leg Up with Alex Garrett here (https://www.spreaker.com/episode/onelegupalex-recaps-the-ddnc-public-policy-forum-2025-ease-frustration-through-legislation–64777264)
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