Advocacy has a way of bringing out the best in people

Last week, my parents joined hundreds of advocates on Capitol Hill in Washington, D.C. Along with others who have loved ones with cystic fibrosis (CF), they met with the staffers of senators and representatives from Kentucky.

While there, my parents explained what CF is and all the medications and medical care it requires. This is a subject they’re experts in, having raised two children — me and my late sister, Alyssa — with the disease.

In advocating for legislation that would lower healthcare costs for our community, my parents described the difficulty of navigating health insurance access and coverage. The biological implications of CF aren’t the only challenge we face; structural barriers can also significantly diminish our quality of life. Many people ration or even forgo medications because they can’t afford them. Advocates explained how legislation could reduce these structural barriers and improve the lives of people with CF.

This was the second time my parents went to the Hill to advocate for our community. I went once in 2019.

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It is surreal to walk the cold, marble halls of Congress, knowing the power that has flowed through those corridors. It feels invigorating to know you’re at the heart of where change is truly possible, near the very people who write laws that could directly benefit you. It’s pure. It gives you an adrenaline rush. I recommend participating if you ever have the opportunity.

It can also be discouraging. Sometimes you meet with disengaged staffers who don’t take notes. It’s hard to imagine a legislator changing their decision on something as consequential as a bill if they won’t even listen to their constituents.

This is why it’s important to understand what advocacy is and what it isn’t. If we defined advocacy only as actions that change legislation, we would be deeply disappointed and burn out quickly. The good news is that advocacy is far more than that. We don’t just lobby our government officials; we advocate at work, in doctors’ offices and hospitals, and in clinical trials.

To me, advocacy is rooted in conviction. To advocate is to believe a better world is possible and to work to make that world a reality. It is a necessary endeavor — one that has contributed to the significant improvements in CF life expectancy over the past few decades. Sometimes, the impact of our efforts isn’t apparent for years, but over time, these simple, small actions become a tidal wave of progress.

A lot of the time, advocacy is also rooted in heartbreak.

Consider my parents. They went to Capitol Hill to advocate for people with CF in honor of Alyssa and me. They channeled their grief and sadness into storytelling, hoping their experiences could spark change for others. This kind of resilience is what it means to be human. My parents know I’m relatively healthy, but after losing Alyssa, their greatest fear is losing me. They want to prevent that.

While they were in D.C., I pondered how they taught me almost everything I know about advocating for myself.

Advocacy brings out the best in us. It defies binary and myopic thinking, and is both painful and intensely liberating. It’s what happens when people refuse to accept things as they are and insist that they can be better.

We must not only hope that the world can be better, but also demand that it is so.

My parents have taught me many lessons, but this is one of the best. Thank you, Mom and Dad.

Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.