advocacy, Healthcare

Ode to the Advocates


It has been said that a journey of a thousand miles begins with a single step. I must agree literally and figuratively. This past weekend restored a lot of faith in the advocacy work that so many of us are doing.

Our conditions impact us on every level; physical, emotional, financial, social and every other realm that you can imagine. Amid all these things going on, it is important to remember that each of us still has a voice. Even on our worst days, we still have a voice. One that can share your experiences, can make you a self-advocate and one that always has your best interest at heart.

Many, in fact if not all patients become advocates at some point. Advocacy can be listening to someone, it can be doing research on conditions or becoming more familiar with insurance, just to name a few. Caregivers are advocates from the very moment they take on the role. With every breath they take, they always have a focus.

As much as our diseases take away from us, they also give us back things or allow us to see things from a different point of view. Personally, for me I’ve been able to see things from both sides of the fence since I’ve worked in health care and am now a patient. My diseases have given me the ability to raise awareness and affect change.

The chances are pretty good that your diseases have given you the same ability to raise awareness and affect change. If you were in Washington, DC over the weekend, I can without a doubt say that many lives were changed. An event called Unite@thehill was held.

Five outstanding organizations came together. Chiari Connection International (CCI), Chiari & Syringomyelia Foundation (CSF), DURAble Brains Foundation Inc, Dysautonomia Support Network (DSN) and The Ehlers-Danlos Society all worked hard to put on a great event. Doctors, nurses, patients, caregivers and loved ones all came together. We received refreshers on policies and legislation. We were reminded that we are powerful as a single voice and even more powerful as a collective one. Passion for health care exuded from each presentation and speaker, as well as every person attending.

PCORI, Patient-Centered Outcomes Research Institute, was one of the main focuses of discussion because funding only goes through 2019.  “PCORI was established to fund research that can help patients and those who care for them make better-informed decisions about the healthcare choices they face every day, guided by those who will use that information.”

On Monday, we went to Capitol Hill. We pushed, pulled, huffed and puffed our way to congressional offices. We all were exhausted yet pushed our bodies with our passion to raise awareness. Our meetings put faces on diseases and our stories made them come alive. We are no longer unfamiliar terminology. We are real people. We are why PCORI needs to continue doing exactly what they are. This point was taken to each office.

My first day of lobbying was an experience like none other. I learned the power of a story, the ability to make a difference and the ability to be heard on a National level. I’m humbled. The beauty of our surroundings and history are something that must be experienced in person. Pictures can never do justice. I’m grateful to have had this opportunity and am looking forward to next year

The political circle was completed on Tuesday when I flew home. As I got off my plane, the Governor was standing there, waiting to board. I just smiled and sat back for a moment. We truly did something amazing. Something beyond measure and something that we will hold with us forever.

unite at the hill

 

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