Attending Washington Days reminds me that my voice matters

A columnist prepares to lobby congressmen on behalf of his community

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by Joe MacDonald |

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This week, I’m doing something I’ve never done before: stepping into the ring of politics and lobbying my congresspeople.

Many of those in the bleeding disorders community gather annually in Washington, D.C., to meet with U.S. representatives and senators. The goal is simple: to remind legislators that medical care is crucial for our community and that we must receive funding to enhance our families’ quality of life.

These efforts are known as Washington Days. Every March, which is Bleeding Disorders Awareness Month, the community gathers to remind those representing us that our stories and needs matter. We hope the efforts will help provide adequate monetary support for the treatment of our blood brothers and sisters. Those who attend do not lobby for one person, but for everyone who lives with a bleeding disorder.

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Bleeding Disorders Awareness Month kicks off in March

Sharing our stories

As I think about the task at hand, I must admit I’m a little nervous. As of this writing, I’m preparing to take a plane to the nation’s capital and meet with congresspeople. I shouldn’t feel too anxious. After all, I’m a pastor; I stand in front of a group of people every week to preach a good word so that everyone who hears the message may experience joy.

Despite my training, this kind of speaking feels very different. When I see the faces of my congressional fellows, I won’t be discussing and interpreting a sacred text. Instead, I’ll tell them about the most precious part of who I am: my sons, who both live with hemophilia. They’ll hear about my oldest, Julian, and how he hopes to make it to Broadway one day with his voice, and how my youngest, Caeleb, dreams of becoming a graphic artist. My story will center around my family.

My goal is to ensure my representatives hear the stories of the brave people who struggle with bleeding disorders. I hope to show pictures of my sons and share how they manage life, including how they navigate the world with hemophilia. The congresspeople must put faces to names to remember the importance of our loved ones’ medical needs. They must know that their actions determine the quality of care that those in the community receive.

As I pack for my journey, I feel my heart race, as I realize I’m not going to Washington to be a simple tourist. I’m meeting with our country’s leaders to help influence healthcare decisions. I’m fighting for my sons and for innovative approaches to the treatment of bleeding disorders.

Amplifying community voices

Representing my population is a task I don’t take lightly. As vice president of the Sangre de Oro chapter of the National Bleeding Disorders Foundation, I bring the concerns of all New Mexicans with bleeding disorders. When I meet with my senators and congresspeople, I carry everyone on my shoulders. I take their voices into the room with me.

While eating dinner last night, I sat at the table with my family, discussing the day’s highlights and other topics I dare not mention in this column. I brought up the subject of my trip to Washington and immediately received unsolicited advice from Julian and Caeleb.

“Tell them we need to make insurance more affordable,” my oldest son said.

“Make sure they know that we depend on our Hemlibra [emicizumab-KXWH],” my youngest added.

I smiled when I realized they knew the issues directly affecting them. Soon, I hope, my sons may want to participate in Washington Days themselves. For now, the lobbying work is up to me. I hope my voice matters to my incredible community as we all continue to fight the good fight to promote our medical needs so that our loved ones may have the best quality of life possible.

Note: Hemophilia 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 another 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 Hemophilia News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to hemophilia.


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