What Does Advocacy Mean to You? (Part 1)
Advocacy is a pillar of the cystic fibrosis community, and we are a small but mighty group. There are lots of ways to advocate, including volunteer work, policy work, sharing information on social media, building or managing CF programs, various walks and runs, and more. We asked our team of contributors and moderators, aptly called our "advocates," to share what kind of advocacy they do and what it means to them. Here is what they said:
Advocacy for cystic fibrosis
Standing up for something
Response from Janeil Whitworth
There are so many ways to advocate while living with CF. Advocating simply means standing up for something you are invested in. Sometimes it’s as simple as sharing your story with friends and family so they can have an inside look into what CF actually looks like and why they should care. Other times, it’s much bigger, such as advocating at the state or national level for policy changes that benefit CF.
For me, it’s somewhere in the middle: I share my experiences with friends and family and a larger audience on social media, participate in every clinical trial I am eligible for, and support causes or legislation that I know would benefit the CF community.
Being active and involved
Response from Kenny Boutot
To me, advocacy implies being active and involved in spreading awareness and raising money for the cause the advocate has chosen to support. I haven’t really considered myself to be an advocate by that definition, because I am simply a patient, just living a life with this illness.
When I was younger and involved in fundraising and spreading awareness for CF in my school community, I felt uncomfortable because I didn’t like “asking” for money. I felt a little selfish since it was for my own benefit and I personally feel like there are some maybe more worthy causes or causes that would benefit the planet and thus more people, so I never felt like I was sincere. These days, with Cystic-Fibrosis.com available, I can share what life is like with CF without feeling like I’m trying to solicit anything. If this is a version of advocacy, I’m all for it!
Bringing a patient perspective
Response from Marieliz Landa
Advocacy for me means everything. It means standing up for the voices of those who are at times drowned out by fear or miseducation. When you advocate you are voicing concerns and bringing a patient perspective that otherwise would not be there. It is providing influence to better the care and treatment of others with cystic fibrosis and that, for me, means the world.
Improving healthcare for all
Response from Ella Balasa
To me, advocacy means being passionate about and going to lengths to bring awareness to a cause, in turn encouraging others, and ultimately helping oneself. Advocacy requires a person to yearn for more information and understanding about the cause or condition to be able to identify barriers and obstacles in obtaining the needed outcome. These obstacles are what fuel the passion of an advocate and what moves healthcare to advance research and outcomes.
Taking stock in the knowledge we have from our lived experience of having a condition helps us to feel confident in voicing our thoughts and opinions to the healthcare system, which can lead to providing suggestions on improvements in gaps in care. When there is a greater portion of knowledgeable people who can understand and articulate their needs and their experiences, there will be tremendous improvements in the care we are receiving. These are advocates.
Those who have fought for me
Response from Katelyn Harlow
Advocacy is public support for a cause or policy, but to me, advocacy means someone who is willing to fight in your stead. When I think of advocacy, I think of the policymakers and scientists who stood up for us and fought for medication access; I think of my husband who knows my wishes and speaks for me when I am ill; I think of my parents who advocated for me when doctors didn’t know I had cystic fibrosis. Those people, they stand in the gap for me. Advocacy allows those who care to explain what I need to whoever needs to hear it. It bolsters me and reminds me I am not alone.
What does CF advocacy mean to you?
Each person has their own way of practicing advocacy for cystic fibrosis. We would love to hear how you and your loved ones advocate. Share your thoughts and experiences in this advocacy forum.
Have you (or a loved one) been experiencing any negative side effects from Trikafta?