First-ever National Lupus Public Health Agenda Provides Roadmap to Improving Care and Treatment
Suggested actions will bring much needed attention and resources to an underserved disease
The Lupus Foundation of America, the National Association of Chronic Disease Directors and the United States Centers for Disease Control and Prevention (CDC) convened on Capitol Hill to unveil the first-ever National Public Health Agenda for Lupus to Congressional leaders. The National Public Health Agenda for Lupus identifies public health priorities, strategies and recommendations that are relevant and complementary to efforts in lupus biomedical research and clinical care and serve as a model of a comprehensive approach to lupus care and treatment. The National Public Health Agenda for Lupus was developed by the Lupus Foundation of America and the National Association of Chronic Disease Directors in collaboration with leading lupus and public health advocates. The effort is made possible through funding from the CDC.
Suggested actions outlined in the National Public Health Agenda for Lupus are far ranging, from improving data collection and research, to development of self-management programs, to the development of robust care coordination models and public awareness. The National Public Health Agenda for Lupus is organized and framed under the CDC’s Four Domains of Chronic Disease Prevention. The Agenda also addresses health disparities and communication strategies.
“While we have seen progress over the past decade, we still have much work to do to ensure a robust public health and well-funded biomedical research effort,” explains Sandra C. Raymond, President and CEO, Lupus Foundation of America. “Lupus is a misunderstood and unpredictable disease, often with devastating consequences. The National Public Health Agenda for Lupus provides, for the first time, a much needed blueprint for all stakeholders to guide action in the fight against lupus.”
Lupus activist Brian Kaplan, former member of the Lupus Foundation of America’s National Board of Directors, moderated the discussion at today’s congressional briefing and shared his personal experiences living with lupus. Presentations were also given by: Representative Tom Rooney (R-FL), Co-chair, the Congressional Lupus Caucus; Medical Epidemiologist Charles Helmick, MD, Centers for Disease Control and Prevention; John W. Robitscher, MPH, President and CEO, National Association of Chronic Disease Directors and Sandra C. Raymond, President and CEO, Lupus Foundation of America.
“Individual health depends on societal health and healthy communities, which is why a public health perspective, in addition to a biomedical approach, is crucial in the fight against lupus,” adds John W. Robitscher, MPH, President and CEO, National Association of Chronic Disease Directors. “With the support of our partners, we call upon everyone who took part in today’s discussion and all public health and lupus stakeholders to do their part and join together in the fight against lupus. The implementation of the recommendations contained in the National Public Health Agenda for Lupus will require a strong commitment among local, state and national health and public health organizations, advocates, policy makers and people living with lupus.”
“Lupus is a complex disease that requires a coordinated and multifaceted approach,” says Casey J. Hannan, MPH, Arthritis, Epilepsy and Well-Being Branch Chief, United States Centers for Disease Control and Prevention (CDC). “CDC is committed to enhancing the health and quality of life of people with lupus by supporting the strategies and recommendations outlined in the National Public Health Agenda for Lupus.”
The Lupus Foundation of America’s role in this initiative complements the Lupus Foundation of America’s ongoing research and education efforts and strategies to improve quality and care of people with lupus and find new ways to manage the disease.