The Patients’ Voice Heard at LUPUS 2019
April 11, 2019
The Lupus Research Alliance is pleased to report on an inspirational talk our fellow colleague and good friend Kathleen Arntsen, President & CEO of Lupus and Allied Diseases Association, Inc. (LADA) gave at the recent 13th International Congress on Systemic Lupus Erythematosus. Called LUPUS 2019, the meeting was an opportunity for researchers, clinicians, healthcare providers, patient advocates, organization leaders and people with lupus to learn about the latest lupus research while interacting with the global lupus community.
A passionate patient advocate for the lupus, rheumatology and autoimmune communities for over 33 years, Kathleen also coordinates the Lupus Agencies of NYS and is the Patient Representative for the Autoantibody Standardization Committee in Rheumatic and Related Disorders, and a member of the Advancing Lupus Pillars for Health Advancement (ALPHA) Project Global Advisory Committee. Kathleen has provided public testimony before the FDA, Congress, and various federal and state agencies. She served as the only Lupus Patient Representative at the FDA for eight years and was a driving force behind the Lupus Patient Focused Drug Development (PFDD) Initiative, co-leading the effort with the Lupus Research Alliance along with the Lupus Foundation of America.
Entitled, “The Power of Advocacy to Improve Lives,” Kathleen’s talk was part of a session called The Patient Voice. Besides allowing international patient advocates the opportunity to passionately share their advocacy initiatives, the session included an interactive word cloud representative of the attendees’ reaction to the program. The session was mentioned as a favorite in the Congress organizers closing remarks.
“It was an honor to lead an interactive session on advocacy at the Lupus 2019 Meeting where lupus advocates from around the world shared their amazing efforts to improve lives,” commented Kathleen. “I am proud to be an advocate in the lupus community and stand alongside these incredible warriors.”
Fighting to make sure that the patient voice is recognized in the research, healthcare, regulatory and public policy arenas, Kathleen advises others on how to take part in the advocacy process. “The wonderful thing about being an advocate is that you can make your voice heard from anyplace, including the comfort of your home and you can even be in your sweats or pajamas. Each of you has the power and the passion to make a difference through advocacy.
Our favorite takeaway from Kathleen’s talk: “Advocacy is turning your emotion into motion and outrage into action.”