During the week of March 1, 2021, ten MG advocates volunteered their time to participate in RARE Across America hosted by the EveryLife Foundation for Rare Diseases. The volunteers had meetings with United States Senators and Representatives and their staff to discuss key advocacy issues, insurance coverage, and other challenges faced by the rare disease community.

 

Meetings were held virtually, and advocates were paired with other advocates from their state or local district. The volunteers focused their discussions on several key legislative topics including:

 

• Joining the Rare Disease Caucus to learn more about the challenges that the rare disease community faces and the policy priorities of the community.
• Cosponsoring the Speeding Therapy Access Today (STAT) Act, a bill to strengthen rare disease patient access to FDA-approved therapies.
• Supporting Rare Disease Programs Appropriations to improve the accuracy of diagnosis of rare disease, increase funding for rare disease infrastructure and expand support.
• Cosponsoring the Newborn Screening Saves Lives Reauthorization Act, HR 482.

MGFA is proud to support this ongoing advocacy effort and to make an impact on federal policy for the needs of the MG Community.

 

Our volunteers highlighted their powerful experiences when participating in this week-long event, and several of them conveyed those wonderful experiences as part of their testimonials.

 

Kim Eldridge is an MGFA Board Member and advocacy workgroup lead from Kentucky. She said, “While the virtual experience pales a little in comparison to being in person, it was still an amazing experience. Congressman Guthrie (KY) attended our meeting with his office. He was so engaging! He was asking questions, and shared his own experiences that his son went through as a child that were similar to those experienced by a member of our group. He spoke about a meeting with President Biden and VP Harris just the day before our meeting. They are discussing a bipartisan special agency, possibly in NIH, that will work on rare diseases. He acknowledged that the Marketplace does not work well for people like us. It was truly an uplifting conversation.”

 

Laura Chandler said that “Many of us have to advocate for ourselves in everyday life. We have to find ways to make MG make sense to our friends, families, coworkers, and doctors. It can make us feel very vulnerable; we have to share the shortcomings of our bodies, our lives, and sometimes our worst fears in order to be heard. But, using my story to effect change is one of the most empowering experiences I’ve had. Advocacy also is a great reminder that you aren't alone.”

 

She goes on to say, “I encourage every MG-er to practice telling their story and being honest about their needs. Increasing awareness of MG, telling your story, ad articulating your needs is advocacy in a nutshell.”

 

Deborah Vick, who is also into media relations, said, “I used my personal stories, especially as a seronegative MG patient, to introduce the ask for the STAT Act. My talking points began with my connection to the rare disease community, my advocacy endeavors followed by the limitations and at times, life threatening experiences. I discussed the types of treatments available to me and the absolute need for the research, cohesive connections between researchers, clinical trials, FDA approval and then bringing said treatments to the marketplace, with additional focus on the medicare and medical coverage.”

 

Kristina Voskes reflected on her experience by saying, “Rare Across America was a great opportunity to learn about upcoming legislation that can directly impact those living with a rare disease, and a chance to share my personal MG story with my state representatives. Myasthenia Gravis can be a particularly challenging condition to live with. Every experience is different, FDA approved treatment options are limited, and funding for research pales in comparison to other diseases.”

 

“Facing MG can feel like an uphill battle at times, but Rare Across America felt like a huge step in the right direction. Getting the opportunity to advocate for a Rare Disease Center of Excellence was both empowering and hopefully impactful. Meeting with Congresswoman Bonamici (OR) was particularly meaningful. She was compassionate and genuinely interested in my life with MG, and recognized that the frequency at which a disease occurs should not determine the level of care or quality of options that patients have access to.”

 

And Natalia Travis is a volunteer who attended this annual event for the first time. She said, “Having a virtual option may have provided the opportunity to get involved that some may not have otherwise had. That being said, it was really encouraging to see both local rare disease advocates doing their best to represent their loved ones with rare diseases, and to see that the offices of our elected officials truly do take an interest in our experiences and are willing to listen to our stories. I’m hoping to attend next year, if given the opportunity.”

 

Please click here to read the full volunteer advocate testimonials.

 

If you are interested in being part of “Our MG Voice” advocacy campaigns like this one, please reach out to me at gmvalo@myasthenia.org.