Advocacy on the Hill: My experience at this year’s Rare Disease Week

A few weeks ago, the EveryLife Foundation for Rare Diseases hosted its 12th annual Rare Disease Week on Capitol Hill. This year, 600 advocates, including me, gathered in Washington, D.C., to learn about public policy, share our stories with legislators, and advocate for our communities.

I never dreamed I’d be speaking with U.S. representatives and senators about my daughter Bella’s journey with neuromyelitis optica (NMO). Although I’m a writer and an ambassador for the The Sumaira Foundation, I have no experience speaking with legislators. Still, it’s important to advocate for policies that will improve patients’ access to treatment and enable more timely diagnoses.

So, in the months leading up to Rare Disease Week, I attended virtual sessions hosted by Rare Disease Legislative Advocates, a program of the EveryLife Foundation, to learn how to be an effective advocate and make a lasting impact on policymakers. We discussed policies that have already been implemented, such as the Orphan Drug Act of 1983, which encourages the development of drugs for rare diseases like NMO. We also went over legislation that has been introduced in Congress, such as the BENEFIT Act, which, if passed, would allow patients and advocates to be more involved in the U.S. Food and Drug Administration’s benefit-risk assessment for drug approval.

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Settling in on Capitol Hill

Arriving in Washington, D.C. was a bit overwhelming at first, as everything and everyone move so quickly. The first day I was there, I had the opportunity to meet with an NMO patient and their mom for the first time. I find joy in meeting others on the same journey as Bella, and it’s always nice to meet a fellow caregiver and share our experiences.

My second day began with a tour of the White House with a few of my fellow Sumaira Foundation ambassadors. It was amazing to be in that building and witness all of its history. By the end of the day, I was convinced I could be a part of the Secret Service! The day ended with an amazing dinner hosted by Sumaira Foundation founder Sumaira Ahmed herself.

My third day consisted of meetings with other advocates to discuss the work of the EveryLife Foundation, do a deep dive into healthcare policy, and practice our speeches for our meetings with House and Senate leaders. I ended the day by finding some cherry blossom trees in bloom, overlooking the most amazing sunset at the Washington Monument. I was so moved by the history of the nation’s capital and the opportunity to raise awareness of rare diseases.

Cherry blossoms in front of the Washington Monument at sunset in Washington, D.C. (Photo by Candice Galvan)

Time to advocate

The next day was our big day on Capitol Hill. I woke up early, got dressed, and practiced my 90-second speech in the mirror several times before heading out. I also reminded myself that policymakers are people, too, and aren’t as intimidating as they may seem.

My first meeting was with a staff member from the office of Rep. Brittany Pettersen, who serves the 7th District of my home state of Colorado. A few other Coloradans representing different rare diseases also attended. The meeting lasted about 30 minutes and seemed very productive.

As I was heading to the Senate office buildings for my next meeting, I had the opportunity to see the U.S. president and vice president enter and leave a meeting with Congress. This was one of the highlights of my trip, and I was lucky to experience it with two other advocates.

My second meeting was with Sen. John Hickenlooper’s office. Eight advocates attended, and the meeting was productive, with a promise of follow-up in the future.

Candice stands in front of Sen. John Hickenlooper’s office on Capitol Hill. (Photo by Candice Galvan)

Once our meetings were done, all of us rare disease advocates gathered on the steps of the U.S. Capitol for one big photo op. That evening, I had the chance to attend a reception honoring rare disease artists, including one with NMO. It was an amazing way to close out an eventful week.

This year’s Rare Disease Week taught me so much. The most important thing I learned, which was repeated throughout the week, is that our voice matters, and we can use it to initiate change in our state, community, and rare disease world. I have renewed gratitude for everyone who has the courage and strength to use their voice to advocate for people like Bella.

Note: Neuromyelitis News 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 providers 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 Neuromyelitis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to neuromyelitis optica spectrum disorder (NMOSD).