2024 National Advocacy Summit

By Suzanne Tierney, Lupus Patient First

2024 Lupus Foundation National Advocates

The 2024 National Lupus Advocacy Summit was held in Washington D.C. from May 19th through May 21st. The purpose of the Summit is to bring lupus warriors together from all over the country to learn from experts about the latest in lupus research, connect with hundreds of fellow lupus warriors, and advocate for increased research funding, ensure access to care, and advance policies to improve the lives of all people with lupus. 

I cannot tell you what a privilege it is to participate in this event each year. Can you imagine standing next to over 350 fellow lupus warriors, all dressed in purple? I can tell you that the synergy we create is indescribable. The power that surges through the collective group is palpable as we make history by turning Capitol Hill purple. It is truly a profound and humbling experience. 

Eleven other passionate individuals from Ohio shared the experience of meeting with nine of our legislators. We spoke about our personal battles with lupus and aimed to raise awareness about the complex and enigmatic nature of lupus and what we battle daily. The conversations and stories shared on the Hill will have a lasting impact and I am grateful to all who participated. 

Our mission was clear. To educate, raise awareness, and advocate for policies that would benefit all impacted by lupus. This included advocating for increased funding for the Centers for Disease Control (CDC), the Department of Defense (DOD), the National Institutes of Health (NIH), and the Office on Minority Health. All of these are crucial institutions in the fight against lupus. 

Much work must be done to find the cause, cure, and better treatments for lupus. We appealed directly to our legislators to: 

• Cosponsor the Safe Step Act, which would help ensure lupus patients have access to the treatments they need, which are prescribed by their doctor. The bill would restrict dangerous step therapy policies that require patients to fail on treatment before they can access the one they need.
• Cosponsor the HELP Copays Act, which would improve the affordability of medications and ensure patient assistance programs count towards their deductible and out-of-pocket maximum.

I can still feel my heart facing as we proudly marched down the large corridors, searching for our state congressmen and women. It was a privilege to lead the charge for Ohio and be accompanied by Gloria, Tammy, Robbie, Nikki, Larissa, Sharon, Mary, Brittney, Ariel, and Emma. They did a phenomenal job in advocating for everyone in Ohio impacted by lupus. Thank you to all! 

A special shout-out to Ariel Shelton and Rosie Chapman. Both received Summit Scholarships from the Ohio Chapter for being our superstar top Walk to End Lupus Now® fundraisers in 2023. 

I came back exhausted and knew that my lupus was not responding well but my heart was. It was truly an incredible experience, one I hope to make again. Perhaps one of you reading this magazine will be next year’s Summit Scholarship Winner and will join me on Capitol Hill.