3 minute read
Oley Voices: Advocacy
Andrea Taylor, RD, CNSC | Oley Foundation Manager of National Advocacy
Throughout my career as a dietitian, I have witnessed many of the challenges nutrition support patients face. I have listened to their daily struggles as they fight to be heard, believed and supported, but I could only do so much in my former role. That’s why I sought to work for the Oley Foundation—to amplify their voices and make a real difference. My deep adoration for this community fuels my passion and energizes me in my daily work.
When they think of “advocacy,” many people picture someone meeting with legislators at the Capitol, lobbying for a certain bill to be passed. That form of advocacy is crucial and can be highly effective, although it often takes time to bring about change through legislation, as it is a gradual process. But there are many other forms of advocacy. In its simplest form, advocacy means speaking up for those who may not have a voice and ensuring their needs are heard and met.
In addition to offering patient-centric education, leading awareness campaigns such as HPN Awareness Week and Feeding Tube Awareness Week, offering monthly opportunities for virtual connection and support, and responding to daily inquiries from members, your Oley team has been actively advocating behind the scenes on issues that are important to you. Here are some recent examples:
Submitted a letter to Colorado Medicaid supporting the expansion of GLP-2 pre-authorization requirements in line with research findings.
Presented at the Mito Town Hall to raise awareness about the Oley Foundation.
Submitted a letter in support of Patient Intestinal Failure ECHO (PIF-ECHO).
Submitted a letter in support of the research project “Defining the Natural History of Pediatric Intestinal Failure.”
Presented during the FDA Compounding Listening Session on the topic of drug shortages.
Signed a letter in support of the Creating Hope Reauthorization Act.
Submitted public comments on the proposed China tariff affecting medical supplies, including enteral syringes.
In addition, I’m thrilled to have represented Oley at COGI’s Equity in GI conference in Atlanta, Georgia, in late July. After a deeply inspiring experience last year, I was excited to return, to learn and explore how Oley can further promote health equity. In August 2024, I’ll present “Building Stronger Connections: Patients, Clinicians, and the Oley Foundation” at the Virtual PN Summit. By raising awareness among nutrition support clinicians, we aim to reach more patients earlier in their journey. You can make a difference, too! Share your story to educate others and raise awareness. Write to legislators about issues affecting those on nutrition support, participate in research, and build strong relationships with your healthcare team to involve them in advocacy.
Reflecting on our recent advocacy work highlights the importance of our collective voice in bringing about change. But the journey is far from over. Your support and involvement are crucial as we face new challenges and opportunities. Thank you for being an essential part of our advocacy efforts.
Tell us what you are doing!
We’d love to hear what advocacy efforts you are involved in or how you are being a voice to the community. Email us at info@oley.org.
