Kathleen Arntsen

United States
Kathleen A. Arntsen is the President & CEO of Lupus and Allied Diseases Association, Inc. (LADA) and has been a strong leader and patient advocate for the lupus, rheumatology and autoimmune communities for 37 years. She is a member of the Association of Rheumatology Professionals, the NY State Rheumatology Society, and currently serves as a member of the Autoantibody Standardization Committee in Rheumatic & Related Diseases, the ALPHA Project Global Advisory Committee and on numerous coalition steering committees.
Kathleen has been robust in her efforts to put a face to autoimmune disease and in ensuring that the patient stakeholder is included as an equal participant in the healthcare, regulatory and public policy arenas and across the research continuum, drawing on her own experiences in living with lupus and multiple autoimmune conditions since childhood. She has been unwavering in her support of innovative research initiatives for diseases of unmet need, patient-centered healthcare and research, and patient empowerment programs aimed at enhancing quality of life.
Kathleen believes strongly in self-advocacy, stressing its importance by sharing her own journey to empowerment and becoming part of her healthcare team, where she plays a major role in the decision-making process. She has been very vocal about the significance of clinical research trials and the importance of participation in bringing better therapies to individuals with lupus and other diseases of unmet need, readily sharing her personal clinical research experiences. As a visionary, she saw the need for a patient-friendly trials initiative, developing Hope is on the Horizon; Clinical Trial Participation-What to Know, an interactive education program and launching it in 2006 prior to other lupus trial programs.
Kathleen has testified before the FDA, Congress, and various federal and state agencies, and is strongly committed to ensuring all Americans have access to appropriate and affordable healthcare and treatments based on clinical consideration. She served as the Lupus Patient Representative at the FDA, as a Patient Expert during the ICER Lupus Nephritis Drug Review, as a Steering Committee Member of the CDC Public Health Agenda Lupus Project and was the initiator and a Steering Committee Member of the Lupus PFDD Initiative.
Kathleen is known as a resilient grassroots activist who coalesces others to support advocacy and research efforts. She promotes unity in the communities that she represents and fosters collaboration among all stakeholders to advance research and advocacy initiatives.
Kathleen’s work background in insurance marketing, sales training, and medical billing, combined with her patient and provider community interactions and personal healthcare experiences, have helped to shape her into one of the most powerful and unique advocates in the nation. She has received various awards for her efforts over the years and is a co-author on 5 published abstracts.
Kathleen is a graduate of Colgate University and resides in Verona, NY with her husband David.
Speaking In
11:00 AM - 12:00 PM
Wednesday, June 7
Legislative advocacy is cornerstone to achieving impactful public policy. Many advocacy efforts are…