“Advocacy is not about being the loudest voice, but about making sure the right voices are heard—especially those living the experience every day.”
— Regina Holliday, patient rights artist and advocate
Here are a few advocacy efforts members of the ALA are working on:
🟦 Ongoing and Completed Advocacy Efforts for Lipedema
🏥Online Advocacy
Seen and Heard Web Show
Board member Jenny Beaujean was a guest on the Seen + Heard web show, discussing Lipedema and Lymphedema.
Status: Available online now!
✅ Change.org Petition
Include Lipedema in U.S. ICD-10 Medical Codes
A public petition urging the CDC to recognize lipedema as a distinct disease in the U.S. ICD-10-CM codes. The petition emphasizes the urgency of action without waiting for ICD-11 implementation.
Status: Open for signatures.
🔄 ICD-10 Proposal to the CDC
Letters of support from ALA members were submitted to the CDC’s Coordination and Maintenance Committee. Dr. Karen Herbst and colleagues have submitted an updated proposal requesting inclusion of lipedema-specific ICD-10-CM codes.
Status: Pending CDC decision.
More info: Lipedema ICD-10 Proposal Summary
📘 Medical Provider Education
Patients and advocates are encouraged to share the Lipedema Foundation Physician Brochure with their healthcare providers to promote earlier diagnosis and appropriate care.
Status: Ongoing.
🧪 Drug Research Advocacy
ALA submitted requests to pharmaceutical companies encouraging research and clinical trials involving GLP-1 medications for lipedema.
Status: Completed. Advocacy outcomes transitioned to the Lipedema Foundation for continued efforts.
🏥 Medical School Curriculum Campaign
An email campaign was launched targeting all 182 accredited medical schools in the U.S., urging the inclusion of lipedema in core medical education.
Status: Round 1 completed. Future outreach planned quarterly.