The advocacy efforts of the Immune Deficiency Foundation (IDF) are critically important in helping to shape public policy that impacts people living with primary immunodeficiency diseases (PI)—from Medicare issues to high out-of-pocket costs, from newborn screening to healthcare access. Because legislators are more likely to listen and take action on a bill if they hear from constituents, IDF maintains a robust volunteer advocacy program. The people who can best advocate for legislation and policies impacting the community are the individuals and families who live with PI—day in and day out. This group of committed volunteers takes their activism to the next level by using their experience and knowledge to advocate for people with PI.
Rashann Fontenot is one of those dedicated volunteers. She was diagnosed with Common variable immune deficiency (CVID) in 2011 and has been an active member of the IDF community for many years. She started volunteering at IDF Walk for PI, and she quickly became interested in doing even more. Rashann initially signed up for IDF Action Alerts, IDF’s online program to alert members of the community when they need to contact their legislators regarding issues that affect people with PI. This helped her become familiar with the legislative challenges faced by the community. Eventually, Rashann became an IDF Health Access Advocate, taking her knowledge and passion to legislators’ offices to strengthen policymakers’ commitment to advocate for people living with these rare, chronic disorders.
Pictured: Rashann Fontenot (left)
“It is a very empowering experience to use your skills, talents and abilities to make a positive difference,” explains Rashann. “I never realize how much legislation is out there affecting those living with PI that requires our voice.”
Since becoming a Health Access Advocate, Rashann has worked closely with IDF to advocate on behalf of the PI community. On two occasions, Rashann met with Legislators on Advocacy Day in Washington D.C. and made her voice heard to protect access to part B Medicare DME infusion services in the 21st Century Cures Act, as well as other legislative healthcare issues, thereby enabling more people with PI to access the treatments they need. She wrote to every single senator and house representative and shared her story.
“I found personalizing the message is more impactful than sending a generic letter,” she says. “A customized letter gets a personalize response and a generic get a form letter response.”
When asked what she would recommend to other potential volunteers, Rashann responds quickly. “You don’t need to start out big. There are a number of ways you can help, depending upon your time and skills—from responding and sharing Action Alerts to visiting legislators and their staffs to drafting Letters to the Editor for local publications.”
It is indeed IDF’s passionate and dedicated volunteers that lend the critical voice to legislative change and overcome healthcare barriers faced by our community.
Thank you to Rashann for sharing her story and all the work you do!
Make change happen by advocating for the PI community. Your voice matters!